Share this:
IndianaScott

Caring for someone with dementia / Alzheimer's

Posted by @IndianaScott in Caregivers, Aug 30, 2016

Thanks for the great idea, @colleenyoung. I think a specific discussion is warranted given the challenges dementia can present to caregivers.

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

colleenyoung

Posted by @colleenyoung, Aug 30, 2016

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

ladycat likes this
donnajane

Posted by @donnajane, Sep 15, 2016

Please join me in to this group. I am caring for my husband with early stages of dementia. He is constantly asking the same questions which can be nerve racking. He can still sit in a group and laugh and converse so many do not realize what is happening. He only drives in and around our area where he has lived since childhood. Never any distance. We play bridge and he amazes me how well he can play complicated hands. We exercise almost daily at a YMCA. He does do some yard work. He has started constantly itching his head, but I can see nothing. Wondering if a dematologist is needed to check.

colleenyoung

Posted by @colleenyoung, Sep 15, 2016

You are most welcome in this group @donnajane. It might give you piece of mind to see a doctor about his scalp to ensure there isn't something there that you can't see. But also be prepared that this may be another symptom of the disease.
It is wonderful that the two of you can still be so active both physically and socially.

When others are not able to realize what is happening, I hope this group can be your virtual shoulder to lean on, a place where you can talk frankly and openly. We look forward to getting to know you.

ladycat likes this
lindabf

Posted by @lindabf, Sep 16, 2016

I really get what that's like! My husband seems to me to be displaying some very early symptoms of cognitive decline. He's 74 and otherwise very healthy. For awhile I thought I'd just gotten very boring and bad at communication since we could discuss something one day and the next, he didn't even remember we'd discussed it. Then I had one of those stomach-sinking "Aha's" - that's a dementia symptom. So far he can still drive, although on long trips, we take detours when he stops listening to the GPS because it confuses him. So far, no trouble getting around by himself in town, even if it takes a bit longer. He also still takes care of routine maintenance around the house. But odd things like suddenly he is incredibly frustrated by the remote control for the TV -- and it's the same frustration every day -- apparently no learning is being retained. We recently joined some friends for a simple domino game and he just couldn't get it -- the rules were overwhelming and the patterns on the dominoes confusing. He had to stop and count them each time, despite the color-coding. This is a former executive with an MBA. He still maintains he is fine and it's just normal senior moment stuff. He gave in and promised me he would ask his doctor about some testing, but I'm pretty sure that's one of those conversations he won't remember having. And despite the fact that he doesn't want me to, I plan to call his doctor and at least share my observations and concerns. When we are with friends or family, the main thing we notice is that his contributions to the conversation are not of the same quality we have experienced in the past. He's still enjoyable to be around for the most part (except when he is having one of his episodes of being aggressively frustrated by things he used to understand but now has trouble figuring out). I'm so glad we were able to get lots of wonderful traveling in before we became caretakers for Mom 7 years ago. Our hope was, after her eventual passing, we would enjoy the rest of our retirement together traveling and volunteering and such. It's discouraging to consider the possibility that for me it will just be an extended gig of caregiving instead. But as I said, we had a good run and a good life and some great trips. No use fighting this hateful disease--but I am sure looking forward to the kind of progress with dementia treatment that we've seen with cancer in the past few years! Glad there's a place to share about it with people who don't pat your hand or roll their eyes, but actually share frustrations, ideas, and tips!

ladycat, pearlandpeacock, macbeth and 2 others like this
IndianaScott

Posted by @IndianaScott, Sep 16, 2016

Hi @lindabf Nice to e-meet you. No eye rolling here in this group and pats are only 'atta-girl!' (or boy) on the shoulder in support!

I was my wife's primary caregiver for 14 years as she battled brain cancer and suffered from many of the symptoms of dementia. She passed at 63 in July. She and I were also secondary caregivers for her mom when she had dementia.

The line separating ability and inability, as it changes almost daily with our loved ones is one of the supreme challenges in caregiving I agree. Being supportive, gently encouraging, but willing to acknowledge the line in the sand when it is arrived at can be a 'Mission Impossible' at times. Frustrating, saddening, and angering...each of which we, caregivers, force ourselves to mask as much as possible.

I send you strength, peace, and continued courage!

macbeth and lindabf like this
nanax2

Posted by @nanax2, Sep 16, 2016

@lindabf My experiences are similar to yours and I remember our family trying to figure out if it was normal memory issues or something more severe; so frustrating and unsettling, not to mention overwhelming.

lindabf likes this
rmftucker

Posted by @rmftucker, Sep 16, 2016

@lindabf I went through almost exactly what you are observing for about 3 years and finally decided to mention some of my concerns to my husband's doctor. My husband was willing to take the testing when suggested by his doctor. He would never have consented to it if I had surged it. The same with giving up driving. My children and I were concerned about how we could convince him to stop driving although he only drove around locally where he was familiar with roads, etc., but when his doctor said he really shouldn't be driving and visited with him a bit, he hasn't even suggested driving since. He still has his driver's license, but I don't think he will be renewing it as it will require Dr's permit and probably a driving test which he could not pass. We'll deal with that when the time comes nearer his birthday.
One day at a time.

IndianaScott

Posted by @IndianaScott, Sep 16, 2016

Hi @rmftucker You bring up an interesting point, which I observed with my wife as well. I could suggest something till I was blue in the face and she would at best bristle and pitch a fight over it, or more often just reject it out of hand. Not so if the word came from her chief doctor. His word was gold to her and if he said A, B, or C, so it was! His word was also what ended my wife's driving. After he said 'no more' she never ever brought it up and I know it was a huge blow to her at the time.

Amazing similarities....

Strength and peace,

lindabf likes this
sallysue

Posted by @sallysue, Oct 13, 2016

I don't really know but it seems to me you should see the dermatologist just so you know for sure it is not something you can do something about. If he says it's nothing skin wise then you know it is the Aslzheimer and we will work on distracting techniques. My question is; my sister lives with my husband and I and has had Alzheimer's for about 5 years. We just got it diagnosed last month (9/16). She has not said another word about it since then. Do you think I should bring it up to ask her how she feels about it? Does she want to tell our siblings? We have already done the DPOA, wills etc. what do you think? Does she really need to talk about it? Should I push for her permission to tell our siblings?

sallysue

Posted by @sallysue, Oct 13, 2016

This is what I am looking for. If I post this does it mean I'm part of the care for dementia people group?

nanax2

Posted by @nanax2, Oct 13, 2016

sallysue, my mom never could come to grips with the fact that she had Alzheimer's and therefore never shared the news with family. My sister and I talked with our aunts and other family who needed to know but we didn't publicize to others. Mom knew there was something wrong and she grieved it so much but just couldn't say he words. I think we honored her in not asking her to tell others. Hope this helps you.

sallysue

Posted by @sallysue, Oct 13, 2016

Thank you @nanax2! That is what I needed to hear. My sister is not grieving it so far. Our lives continue and she follows my suggestions about schedules, diet and lets me give her her meds. So with your supportive reply I think I will just let her be herself and answer the siblings questions as they arise. Thank you so much it has been nagging me and my husband for these last 4 weeks.

nanax2 likes this
safetyshield

Posted by @safetyshield, Oct 13, 2016

@sallysue In my opinion I do not believe you should sister in talking about her Alzheimers but just let her know and give here the environment that you are there to listen without judgement or negativity. She will be going through a rollercoaster of emotions and she will need you to be her rock. I know this will be hard but she will be going through emotions while the Alzheimers takes control. Keep in touch with this conversation group for your support.

safetyshield

Posted by @safetyshield, Oct 13, 2016

If you want to be we are here for you and what ever your needs are

colleenyoung

Posted by @colleenyoung, Oct 13, 2016

@sallysue, first of all, welcome! There are a few things you can do to make sure you get the messages relevant to you.

1. Because you posted a message in this discussion, you will automatically receive an email notification everytime a new message is posted here. If you no longer wish to get these email notices, simply click "unsubscribe" in the next email notice.

2. Follow the Caregiver group to get relevant messages in your Daily Digest. Here's how to follow a group http://mayocl.in/2ebIxQu

3. To get only messages relevant to the discussions and groups you follow:
a. Go to Account Settings https://connect.mayoclinic.org/account
b. Scroll to the bottom.
c. Click the box that says ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST.

Learn more about setting your notification preferences here: https://connect.mayoclinic.org/get-started-on-connect/

Let me know if you have any questions. I'm sure this is helpful for everyone in the group.

sallysue

Posted by @sallysue, Oct 13, 2016

Thank you! Now I'm afraid I'll lose you in cyberspace somehow but I have you bookmarked etc. I really need the support. Thank you again for taking the time to reply.

sallysue

Posted by @sallysue, Oct 13, 2016

Thank you so much!!!!

nanax2 likes this
pearlandpeacock

Posted by @pearlandpeacock, Nov 25, 2016

Yes, my husband also has a LOT of trouble with new learning, although he did manage the code to the new digital front door lock (last year). Part of the problem is that he never really listened to me, even early on in out marriage. For example, I pointed to out neighbors green bin and said see it's recycle day, not garbage, please put ours out and he moved the neighbor's green bin to in front of our house. He can't follow instructions. He no longer drives and he had a car/garage business, I am relieved he doesn't want to drive or ask to. (He was a car nut.) But it is getting worse, I was at the computer in the den and he came in and said who are you? I explained, and he asked me for ID! He has no recollection of this. He seems to come out of the hallucinations. Twice he thought I'd stolen my own car when he was with me.( In the past he's had stolen cars, he once had 30 vintage vehicles.) I've heard some people laugh about these incidents. Geeze, I guess I should too, as I can't change it. But I wasn't expecting this so soon.

macbeth likes this
kdawn32

Posted by @kdawn32, Thu, Feb 16 at 11:07am CST

My Mom has vascular dementia. She is farther advanced than your husband. She picks at the skin on her arm. I have discussed this with her doctor who says it is a stress reaction. It sounds like the same from your husband. Hopefully his scratching is not hurtful. My Mom actually picks repeatedly and has created scabs. Get your husband checked by a doctor. Also I've noted that some things will get stuck, as if on a loop, and they will ask the same question over and over. Some times just seconds after you just answered it. We do 2 things 1) ask them what you just said and may take some prompting like the first letter of the word. 2) write the answer down. They will pick up the paper and reread it. This will give you a break. Doing things that keep brain pathways going like leading them to the answers rather than just giving the answer (after you have give it to them once or twice) seems to help with retention a little longer.

ladycat

Posted by @ladycat, 5 days ago

I understand your feelings. I am 3.5 years into the type of dementia called front lobe. Or more correctly. Frontotemporal lobe dementia. A simple outing to a new restaurant is a challenge as the crowd and / or noise level is enough to unsettle my LOML of 20 good yrs. His carotid stroke damaged the right frontal lobe portion of his brain which largely affects his personality. I pray for strength and peace, have said it many times, we are all in this together, in one way or another we are rowing the same boat. Peace and strength and hugs. We are here for you.

kmkm

Posted by @kmkm, Sep 15, 2016

Hello- I don't get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I'd love to swap suggestions and ideas. Is there anyone out there? Thanks.

tavi

Posted by @tavi, Sep 15, 2016

@kmkm Welcome! I am in the same position as you are -- except I'm caring for my spouse. Looking forward to sharing experiences and ideas with you!

colleenyoung

Posted by @colleenyoung, Sep 15, 2016

Welcome @kmkm. I moved your message to this discussion thread that @IndianaScott started to help bring together people caring for a someone who has Alzheimer's. @nanax2 just joined Connect today too. She is the primary caregiver for her mom who has Alzheimer's. I'm hoping the two of you can connect here.

Kmkm - are you caring for your mom or your dad?

kmkm

Posted by @kmkm, Sep 15, 2016

Thank you, Colleen. I live with my husband, college-age daughter, and my mother. Based on her symptoms (which I've read on the Alz dot org website,) I'd say my mother is probably in the late "Middle Stage" of Alzheimers.

IndianaScott

Posted by @IndianaScott, Sep 15, 2016

Hello @kmkm! YES, we are out here! I was a secondary caregiver for my mother-in-law while she struggled with dementia and then my wife for 14 years while she battled brain cancer and suffered from many dementia-like effects.

While I am not a doctor, nor a trained medical professional of any kind, I am more than happy to share my experiences, successes and failures, frustrations, and happy times of caregiving.

Welcome! I send...

Peace, courage, and strength

kmkm

Posted by @kmkm, Sep 15, 2016

I think I "Replied" in the wrong place. Sorry. I posted below that I live with my husband, college-age daughter, and my mother. Based on her symptoms (which I've read on the Alz dot org website,) I'd say my mother is probably in the late "Middle Stage" of Alzheimers.

kmkm

Posted by @kmkm, Sep 15, 2016

Thank you, IndianaScott.

nanax2

Posted by @nanax2, Sep 16, 2016

@kmkm I, too, am caring for my mom in the late middle/early late stages of Alzheimer's. She lives with us; me, my husband, our recently college graduated daughter. It sounds like we have a few things in common! Some days we cry and some days we giggle because if we don't giggle, we will cry. Even though Mom's memory is fading and she doesn't always know me (usually she thinks I am her oldest sister), she still maintains a large part of her personality which encourages my heart. My mom has been bedridden since January because her legs just gave out on her. She began to be unsettled on her feet and couldn't walk straight. It wasn't long after that when her legs just became like cement. We all hate it for her; however, the silver lining in the cloud is that she can't wander away from the house. I'd love to hear more about your journey with your Mom. I will be thinking of you and praying.

kmkm likes this
caregiver49

Posted by @caregiver49, Sep 16, 2016

I was wondering if you know what caused your mother to stop being able to walk. DId she forget how to walk or does brain damage cause a loss of signal to her legs or ??????? Also, was wondering how one knows that dementia is actually caused by AD. Thank you

macbeth

Posted by @macbeth, Sep 16, 2016

@caregiver49

Caused by AD? Do you mean Attention Deficeit Disorder?

nanax2

Posted by @nanax2, Sep 16, 2016

@macbeth, I took it that it stands for Alzheimer's Disease.

macbeth

Posted by @macbeth, Sep 16, 2016

@nanax2

Thank you. I think I was just confused by the last sentence in caregiver49's comment. Maybe I read it too fast, or maybe I am just tired. It seems as though we're all soooo tired.

nanax2 likes this
kmkm

Posted by @kmkm, Sep 16, 2016

Hello, nanax2. Thank you for your prayers. I will also try to remember to pray for you and the others here who need strength and wisdom in the midst of difficult circumstances. A little about my journey with my mom: I am her only child (and she has no husband) so there's no other family support (except 2 sisters who live across the country and visit once a year.) My mom is 74 and started showing (or I started noticing) symptoms of AD about 9 years ago. She has lived with us for 8 years and has taken 2 different Alz. meds for about 6 years. Two years ago she took part in a clinical trial of an experimental med., which seemed to help a little, but as soon as she discontinued it, we noticed some decline. Her short-term memory is increasingly poor and most long-term memories are completely gone (although she surprises us once in a while!) Although she interacts happily with loved-ones, she doesn't remember significant shared experiences. Her physical health is good and she moves about the house without any help. One of her symptoms is OCD, which manifests in her taking bits of paper towels and wiping spots on counters (among several other non-destructive but annoying behaviors) ---which drives some in my family crazy. She has never really exercised, and I have a hard time convincing her to walk outdoors since she doesn't like to walk outside if the temp. is less than 74 degrees, or more than 78 degrees. However, my mom is generally good natured (with an occasional childish outburst: "You're not my mother!" My struggles are classic: some mild depression, impatience, grief, loneliness, and sometimes anger. I have high expectations of myself and tend to compare myself with what a loving, caregiver-daughter "should be." My husband and family struggle too, but they realize I carry the heaviest weight and they try to give me breaks once in awhile. I am most content when pressing into Jesus, my Rock, and when I am grateful for all that I've been given. I know it will be a long journey and I'm praying for the love, the strength, and the joy that I'll need to finish well. Thanks for asking.

P.S. I have been greatly helped by reading the posts on the "Alzheimers Reading Room" : http://www.alzheimersreadingroom.com/

macbeth

Posted by @macbeth, Sep 17, 2016

@kmkm

I can relate to most of your post. My husband, who is 72, has dementia. I started noticing changes in his early mid sixties, but he was not diagnosed until four years ago. I see similar symptoms in him to what you see in your mother, and I feel the same desire to be the best caretaker and best example I can be. Younger people see us, and I feel it is so important to be a good example to them, so that, when they care for a loved one, they may have learned, from us, how to handle their loved one gently and with respect. I think the most difficult part of this journey is that it can be so long, and so draining. I have no help. The kids live in different states and visit only once every year or two. His surviving siblings are unable to help. My siblings are older than either of us, and have health problems of their own. Our friends seem not to notice that we're no longer out and about much. I think that's the other very difficult part of all of this. Yet, I try to keep a positive attitude and feel thankful for the easier, better days.

Wishing you, and all of us, strength for the journey.

tsoy

Posted by @tsoy, Sep 21, 2016

@nanax2 how do you deal, cope with your bedridden Mom? My Mom can still walk with someone holding her hands and walking backwards in front of her, well she really scuffles her feet slowly. Her gait is VERY slow and her balance is very BAD. I worry I will not be able to handle her at home anymore by myself when she is no longer able to walk at all. I mean How would I get her out of bed to bathroom to living room and back again? Will she have to remain in bed all the time? How can one person change her? Got any pointers?

Thanks and hang in there

IndianaScott

Posted by @IndianaScott, Sep 22, 2016

Hi @tsoy. I hope your day today dawns an OK one!

My wife lost her mobility for almost the last year and a half of her fight. I will say it changed fast and was something she fought hard against, but finally she could only go from bed to wheelchair, then just bed.

In the beginning I could manage one-person transfers with her from bed to chair, but then after awhile that was simply not possible so it would only work with two-person transfers. She did not like them, but she accepted them so she could be in her chair for some of the day.

I learned a lot about how to care for someone in bed all the time. How to change the bed with her in it, how to 'modify' a couple of her old gowns (I had to cut them up the back), hairwashing, how to change her diaper (we always were sure to call them her 'briefs') on my own, and a few others. Necessity is the mother of invention and while my efforts were often just jerry-rigged, they worked for her.

When you want any specific hints let me know.

Peace and strength!

colleenyoung

Posted by @colleenyoung, Sep 22, 2016

Great question @tsoy. Getting pointers from the community will be helpful to many. I started a new discussion to gather ideas. See the discussion
- "Your caregiving tips & "How to" video demos for caregiving at home" http://mayocl.in/2d5JBaj

Let's gather our caregiver tips on this Connect discussion: http://mayocl.in/2d5JBaj

kmkm and foxylady42 like this
nanax2

Posted by @nanax2, Sep 22, 2016

@tsoy, when it started to get hard for Mom to get to the bathroom in time, we began using a commode and kept it in her bedroom. She didn't like it but it did beat the alternative of not making it to the bathroom. We used this method for a few months until it became impossible for me to even move her from her bed to the commode. We began using briefs and bed pads and through the long process of trial and error, we found that TEVA products work the best. We use a brief and a pad each time she is changed. This was not an easy transition (emotionally) for either one of us but we made the best of it. TEVA products are the very best and nothing else I've tried compares. Mom was a hospice patient for six months and "graduated". During this time, we were able to get her a hospital bed (Medicare covered) with a wonderful air mattress that keeps the air flowing so she doesn't get bed sores. When she graduated from hospice, we used some of Mom's money to buy the hospital bed, air mattress, and beside table at a discounted price.

During Mom's time under hospice care, I learned how to change Mom's brief and bedding without moving her out of the bed. Brief changing: have your loved one lie on their back with their legs bent, undo the tabs on the brief and roll up one side of the tab and place it under the middle of their back, roll the patient on their side, clean them and then remove the brief. While the patient is still on their back, slide a new brief (with a pad inside) under them a bit, roll them on their back and adjust as needed.

I hope that answers your questions. If not, let me know and I'll answer what I can.

macbeth likes this
foxylady42

Posted by @foxylady42, Sep 22, 2016

I am new to this site and after reading your post, knew I found the right place to vent and share.

colleenyoung

Posted by @colleenyoung, Sep 22, 2016

Welcome to Connect @foxylady42. Please tell us a bit about you and your caregiving situation. We look forward to getting to know you.

tsoy

Posted by @tsoy, Sep 22, 2016

Hey @IndianaScott, I'm all about learning how to deal with situations BEFORE I need the knowledge! Any pointers you might pass along would be greatly appreciated. I just don't know if I will be able to handle Mom if she gets to the point of not being able to walk at all. She will soon be 94, and with the dementia she does not respond to any requests or demands...she does not help at all any more with getting into/out of bed or chairs or toilet. If she gets to the point of needing 2 people to handle those things, I may need to quit working. We will not be able to afford 2 paid care givers.

Thanks,

IndianaScott

Posted by @IndianaScott, Sep 23, 2016

Hi @tsoy. For quite a long time I was able to do 1-person transfers even when my wife was unable to assist in much of any manner. In our case a bear hug and transfer worked for quite awhile.

I worked hard to get her to agree to let me do a transfer --- only 1 a day --- before she needed it so she knew what was going to be coming later. It seemed to help especially in those early days of 1-person transfers.

When we went to 2-person transfers it was a caregiver and me. They were a challenge since we were then trying to coordinate three peoples' motions, but it got the job done. 2-person did not last long, just a couple of months, before she was unable to withstand the efforts needed to move her, even with two people and she refused --- REFUSED to use the Hoyer lift we had. She saw that as far too much of an indignity but that was just her and her fighting spirit.

It still amazes me how much she had to give up and accept...

Peace, courage, and strength

macbeth likes this
sallysue

Posted by @sallysue, Oct 14, 2016

Me too. Alzheimer's disease

macbeth likes this
macbeth

Posted by @macbeth, Nov 25, 2016

@pearlandpeacock

My husband has dementia, too, and I am his sole caretaker. His dementia has been quite slow-moving. Looking back, I think we are at least six years into it, and, more likely seven or eight, since symptoms could be noticed, but only about four and a half since diagnosis. His confusion has increased more rapidly in the past several months. Occasionally my husband, too, mistakes me for someone else, or does not remember we are married. He has begun wanting to go home, when we are at home. His sundowning often begins in early to mid afternoon, around the time I need a little rest, and then he may become very active, agitated, confused, difficult to handle. As yet, he is on no medication to help calm him.. For some reason, the doctors we have seen seem unwilling or unable to prescribe a very mild sedative for him. He has an appointment with another doctor in mid-December, and, hopefully, that one will be more understanding and helpful.

It sounds as though your husband's dementia is moving much more rapidly. My father's dementia moved rapidly, too. I would say that it was only five or six years from our noticing that something was wrong, to him no longer knowing me. He knew he had a daughter by my name, but he was looking for a very little girl - worried about her if she wasn't home near dusk, wanting to go out looking for her. At least I know he loved his little girl, and tried to protect her. I think he knew my mother a little bit longer.

I have read that many types of dementia are grouped under the title of Alzheimers. This seems problematic to me. Until researchers work very closely with caretakers, or immerse themselves in the lives of the victims, 24/7/365, documenting various individuals' symptoms, behaviors, stages, similarities, differences, they will not be able to accurately categorize these illnesses. Documentation, documentation, documentation, from the people most intimately involved, on a regular basis, is necessary to accurately differentiate these illnesses. I guess it bugs me that seemingly different dementias are sort of thrown into one box. I think there needs to be more and better distinction and categorization in order to get to the roots of the causes. What bugs me most of all, is that it has been fifty-some years since the onset of my father's symptoms, and there is still no cure, and very little and temporary treatment.

In any case, we're in this, too, and any hints or advice we can share with each other may be helpful and appreciated.

Take care.

Macbeth

pearlandpeacock

Posted by @pearlandpeacock, Nov 26, 2016

Yes my husbands father, whom I never met, had it 60 or so years ago, It wasn't even diagnosed. Richard (my husband) told me about his dad, how he was "crazy" and couldn't remember things from one minute to the next, etc. years ago, and the paranoid hallucinations his father had. For example, he thought his wife, Richards mother, was sleeping around...he probably got this notion 'cause she did have a child out of wed lock (in the late 30's), Richards half brother. His father would lock her in the house, the poor woman, and back then she didn't know what to do about it, she was timid and shy and there wasn't the help for abused women. At first I thought his dad had brain damage from chemicals as he was a miner before he retired to the city, married and bought an apartment building. But now it makes sense. His dad had fairly early onset Alzheimer's. I wonder if chemicals may have contributed to it?

It seems to be common now, just wondering if modern environmental factors contribute? Or maybe people are living longer. My own Dad is 88 and has NO signs of it, though.

macbeth

Posted by @macbeth, Nov 26, 2016

@pearlandpeacock
My gut feeling is that chemical exposure has something to do with some of it. For example, Vietnam vets have had a higher incidence of ischemic heart disease (Agent Orange exposure). Since there is nothing in the makeup directing that specifically toward the heart, it could build up anywhere in the body, including the small blood vessels to the brain. That's my gut feeling about what is happening to my husband. With my father, if you put it on a graph, with year one on the left, and year 11 on the right, the decline would be represented by a pretty straight line from the upper left corner, to the bottom right corner. In my husband's case, of course, there is no end year, but the line from the upper left corner would show a much slower, much less direct decline, and rather than being straight, it would be very wavey, until recently, when the waves have turned into more like jagged lines, much closer together, with deeper lows.

sallysue

Posted by @sallysue, Nov 26, 2016

That is a great way to describe things. Thank you for helping us on our journey.

michiganstressedlady

Posted by @michiganstressedlady, 12 hours ago

I am new here but want to acknowledge all of the caregivers here, our struggles and strength. Prayers be with you all and take each day at a time sometimes each minute at a time . Just know you will get through it although some days it doesn't seem like its possible. I find the more I make it through, the more confidence I have , and the stronger I feel about myself don't get me wrong , because there are days I find myself thinking I am the weakest person in the world, and at my wits end......
I have been with a man for 12 yrs. He is 60 now, I am 54...I chose not to get married again as I was for 25 yrs and am widowed , My husband died in a car accident when he was 44 and I 42. He died on Thanksgiving in 2004 and was buried on my Birthday Dec 1.
The man I am with now is 520 lbs, and 6 foot 7...I am 150 lbs and 5;5..as you can probably guess this has caused some other problems with caregiving . He started acting weird, saying things to people like what a nice butt they had or they shouldn't wear that in public, or talking about things he just shouldn't be talking about in public and I asked the Dr about it because after a yr it also became aggressive, He would get so angry when I would try to put the mail on his table when he wanted to take a piece off the table, simple things like that . He would throw things, say mean things , show no empathy, talk about things from past continuously , and accuse me of stealing his pills or money when I don't even have access to his money and don't need his pills.
They did a CT and found he has atrophy in the temporal lobe (Intra orbital ) They have called it Picks disease and I am not sure what that means for the future. I already do everything, and I mean everything , he is on commode, can hardly walk, is morbidly obese, has A Fib, and Diabetic.( type 2 ) and addicted to food and to spending money we do not have. He just got out of the rehab place after 3 months and was in hospital for a mo before that ,
I am at my wits end as he doesn't have a will or a POA , and refuses to get anything to help me as I believe he thinks in his paranoia that I will take his money or hurt him in some way which couldn't be further from the truth....I am at a loss,
I am talking too his Dr about all this at his next visit and hoping the Dr will recommend his getting affairs in order. Thanks for letting me vent. I have no one else , and he has no family that can help me.

ladycat

Posted by @ladycat, 11 hours ago

We have the Roskamp Clinic here in Sarasota , Fl. Please if you can google them. They are doing cutting edge research on all forms of dementia (Alzheimer's , Picks disease , FTD (frontotemporal Lobe Disorder).
We are all in this together. I have a stroke survivor. The debris hit the right front part of his brain. The personality changed from this damage very very quickly.
Know you are doing your personal best. Know that any help or information you can get is a lifeline. A sympathetic doctor or hospital social worker is heaven sent ! Take the best care you can, this is tough sledding ! We are all with you!!

michiganstressedlady

Posted by @michiganstressedlady, 5 hours ago

Thank you @ladycat, I appreciate any help I find here and Thank you so much for your support !

ladycat likes this
michiganstressedlady

Posted by @michiganstressedlady, 5 hours ago

bvFTD is what I believe he has , We have just found out with CT scan that he has Frontal Lobe damage. I believe he had a stroke about a yr ago , as he woke with slurred speech, couldn't get up , and acted very strange. I have been a CNA for 25 yrs , and I kept checking his vitals, and they were fine so I let it wait a bit as he refused to go anywhere and to let me call anyone. A few hrs later he seemed fine again but I do think that was the problem. He has also taken his meds twice now, a whole bottle of klonipin, and a whole bottle of Vicodin, 40 at a time ...I also thought maybe he took his meds wrong again. He wont let me do his meds for him , although I have separated them so that hopefully this doesn't happen again. I especially worry because now he is on OXy, Vicodin, Morphine, and antidepressants .........ugh, It is very difficult dealing with such a big man, and super stubborn and no empathy in him at all any more. My family is put off by him because of the things he says, sexual things , and I do worry with the grandkids around he will say something that will be awful. It has happened and I covered the best I could but one of these days I don't know....and he wont let me tell them what is wrong with him , so it makes it difficult. Everyone just thinks he is nuts , and mean to me when it is a medical thing. ...He is with it most of the time, he can dress himself , and do his teeth , and reads, but I gave up arguing with him , as I found if I just agree to whatever he says , it keeps me sane, and also just because he says something wrong , I do what I have to anyway , and even if he is wrong in something he says , if I agree , it stops the arguing and I still don't have to agree with him but it just makes it easier and no fighting for an hr. This may be the wrong way to go but I don't believe he knows what he says and an hr later he usually changes his mind about it anyway ,

IndianaScott

Posted by @IndianaScott, 5 hours ago

Hello @michiganstressedlady I am Scott and it is nice to e-meet you here. I am not a medical professional of any kind, but I was the primary caregiver for my wife for 14 years as she battled brain cancer. I am sorry to hear of all the trials and tribulations you are having due to your partner's health.

My MIL also had frontal lobe damage and one of the first things that changed in her was that she also was sexually inappropriate and she took to swearing, which she had never done before. We all made the decision to limit her time and interactions with the youngsters in our families for their own good. In my wife's case her neuro doctor told us when there is brain damage very often prior personality traits are hugely magnified in the patient and this was certainly the case with my wife.

I must say I do not know how you manage a patient with such a higher body size than yours. My wife was smaller than me, but we turned to using a mechanical patient lift, such as a hoyer lift. If you aren't familiar with it, this link talks about their use. http://www.wikihow.com/Use-a-Hoyer-Lift.

Also in my wife's case often times it made no difference what I suggested in her care, but if the doctor told her she needed it she listened and his/her words were LAW. So we most often used the doctor to communicate anything that needed to change.

I would suggest the doctor immediately take steps to tell your partner he cannot self-administer his drugs! Taking a whole bottle of Vicodin and a whole bottle of klonopin seems to me to be beyond dangerous!

Hopefully the doctor can also strongly suggest to him to get his affairs in order. It made a huge difference that my wife was agreeable to do this prior to her passing. Remember if you don't have a will, etc. you actually DO have a will --- the government does it their way no matter what you want or wanted.

Peace, strength, and courage!

michiganstressedlady

Posted by @michiganstressedlady, 4 hours ago

Thank you so much @IndianaScott , I appreciate your thoughts and what an amazing person you are to do what you did for your wife! Very admirable . ....being a CNA has made me familiar with lifts , and hoers and such , but I live in a trailer , and room for that type of equipment is very if not impossible to fit in here. He still can maneuver around with walker , and can pivot to get on commode, when he looses his ability to walk idk what I will do ....but that hopefully is later . He also has had all his toes removed on one foot and has broken socket and all tendons in shoulder torn from a fall 2 yrs ago ...which just makes things even more difficult , however I find if he is in the mood to listen to me and if he will follow directions on a specific day , I can do his baths then , or take him out . he isn't driving , he thinks he will again but I do not believe he should , mostly because he wont fit in most cars, and when I drive we have seat belt extensions , and his knees still touch the dash and he takes a toll on my car , .....I can feel the difference when we go up a hill or try to stop ...well it just drives differently then it does with just me ....Idk when he actually got this , but I do know he is completely different then when we met. For some reason sex seems to be his main thought in most things and I have stopped taking care of my grandchildren of which I have 3, ages 9 7 , and 2 ....I used to have them every day after school , and all summer but I now only have them when he is in a good way, and very limited which makes me feel terrible as I am very close to them and have taken them sense they were born ...I will speak with the Dr about him and see if it helps for the Dr to tell him to get his affairs in order and stress how important this is and also about his meds, as I am afraid he will take his whole bottle of Oxy which could be deadly ! ....Thank you so very much for the emotional support you have given me here, all of the special people here !

ladycat

Posted by @ladycat, 4 hours ago

Only us who live this way understand how much it takes. I will continue to ask God for strength and peace for all of us caregivers, they say much is asked of to whom much has been given. I pray also for endurance so we may continue to care for our cherished loved ones.

sallysue

Posted by @sallysue, 3 hours ago

Amen to that.  Thank you and I shall do the same.

colleenyoung

Posted by @colleenyoung, Sep 15, 2016

You replied to the right spot kmkm! I'm so pleased that you connected here with @tavi and Scott.

tsoy

Posted by @tsoy, Sep 15, 2016

Hey There,

I just joined, I care for my soon to be 94 year old Mother with dementia, I’d say late stage at this point. Since ideas and plans you put into action today may not work tomorrow, I think a site/group like this can be helpful to share ideas and methods of coping with issues. That is why I joined. I know I wish I had been more clever sooner, you can’t think of everything, so ideas will work for one person and not for another. For intendance, over a year ago my Mother got up during the night and opened the front door, the next day I installed a dead bolt with a key on each side. She was having trouble finding her bathroom at night, which was literally 10 steps from her bed, so I installed a string of those tube lights on the bathroom wall leading to the toilet. Now we are using doggie poop bags for Mom’s soiled briefs, it really controls to odder. Wish I had thought of that one months ago! Anyway I’m looking forward to getting more, better ideas for copping here.

IndianaScott

Posted by @IndianaScott, Sep 16, 2016

Hello @tsoy I am Scott and wish you strength and courage along your caregiving journey. I cared for my mother-in-law, who had dementia, as one of her secondary caregivers and my wife, as her primary caregiver for 14 years as she battled brain cancer, suffering many symptoms of dementia later in her fight.

I love the idea of the lights! I wish I had thought of that one! Genius! Thanks for sharing it.

I, too, struggled with smells and found that scented baby wipes worked best for this than any of the way higher priced 'adult' brands.

Thanks again for sharing!

Peace,

lindabf

Posted by @lindabf, Sep 16, 2016

A BIG Welcome! The lights and the doggie poop bags are both great ideas that I had not thought of, so thanks for adding value for the rest of us before you even know us! I'm implementing both today! Hope I can return the ideas to you as we participate in this group.

tsoy

Posted by @tsoy, Sep 16, 2016

You are welcome. You can buy extra large bags @ Petsmart. I can get a brief and a bed pad in one bag. I hope together we can come up with many helpful ideas to make like easier.

rmftucker

Posted by @rmftucker, Sep 16, 2016

I also have resorted to Babywipes as they are less expensive and can be purchased in larger quanities. They help keep the skin from getting so dry.

rmftucker

Posted by @rmftucker, Sep 16, 2016

My husband also has difficulty walking, but his is attributed to the silent strokes he has suffered rather than alz.

annie33

Posted by @annie33, Sep 17, 2016

Every time my husband goes to any Dr. he has what they call a panic attack. He has them many times when we go to supper. He has had some at other times. He starts by turning very pale, sweats until his shirt is wet and then becomes sick to his stomach. Marcel has Alzheimer's. We live in an extended care facility which is just great. We both enjoy it. He begins to feel better when he gets back to his recliner and goes to sleep. He is getting so that he doesn't want to leave the apartment or his recliner. When he has one he doesn't totally recover. I am so worried about him. I thought that surely there would be something he could have for anxiety but his Dr says no. Has anyone had any experience with this? If so I would appreciate hearing about it. Phyllis

nategilbraith

Posted by @nategilbraith, Sep 18, 2016

Hi @annie33, I'd like to be the first to welcome you to Connect. I merged your message to this discussion thread where people are already discussing caring for family members with Alzheimer's. I'd like you to meet @IndianaScott and many others who may be able to share their experiences with you.

ladycat likes this
safetyshield

Posted by @safetyshield, Sep 18, 2016

Alzheimers takes away from your memories not just short term but long term as well. It also takes away the memories of body function, With that said for these patience when he clings to an item like the chair or apartment and has to leave it they panic becoming fearful of losing someone thing that they feel safe in. There is unfortunately no medicine that can prevent this. The best thing to do for his mental state is to make changes slowly and with your assurances that everything will be alright. As he loses memories he will be clinging onto you for security. So be patient. Stay with this group so you will get the support that you need. You are terrific to be holding on like you are and caring

ladycat, nanax2, Debby - @tavi and 1 others like this
IndianaScott

Posted by @IndianaScott, Sep 18, 2016

Hello @annie33. I am Scott and it is nice to make your e-acquaintance here at Connect. I was the primary caregiver for my wife for 14 years (brain cancer with many symptoms of dementia) and a secondary caregiver for my mother-in-law who had dementia.

I am not a doctor, nor am I a trained medical professional of any kind. Rather I am just a caregiver who has spent many years in the front lines of taking daily 24/7 care of a high-demand patient.

My wife exhibited significant anxiety and panic over visits to the doctor and later even when a nurse would come see her. At a very late state she finally confided in me she was worried the doctor or nurse 'was going to give me more bad news'. Once we orchestrated a couple visits with only positive news (not telling lies, rather just no bad news) this finally began to lesson.

That said, I will say my wife suffered from one of the most severe cases of neurobehavioral syndrome her doctors at Mayo had ever seen. It was crushing on her and debilitating to me. Her GP here at home was against using meds, but with the help of her neuro-oncologist we began a course of meds, which over the years with much tuning, fine tuning, changes, etc. started to help her. In the end her daily regimen was for over 3 dozen doses of various meds a day, but it finally gave her some help! Her GP continued to be against any pharmacological approach to my wife's problem, but it was the only way to even touch (in a good way) her panic, anxiety, abulia and perseveration.

I suggest you keep trying to discuss this topic with your husband's doctor.

I send you strength and courage!

ladycat likes this
annie33

Posted by @annie33, Sep 21, 2016

Thank you so much. I am glad to have a response.

ladycat likes this
annie33

Posted by @annie33, Sep 21, 2016

Hi, It is amazing how Dr's are isn't it. Marcel's dr, didn't start him on any meds either so he decided to sign himself into a dementia ward, he was there three weeks but when he came out he is on some good meds which has helped him so much and thus have helped me too. We have never been around anyone with dementia and sometimes I feel like I am in a little boat in the middle of an ocean and I don't know what to do. His daughter is wonderful and I don't know what I would do without her. Your idea about your wife worrying about what the dr might tell you is a god one. I am going to try to find out if something like that is going on with him. I will let you know. Thank you

tsoy

Posted by @tsoy, Sep 17, 2016

Here is a more detailed introduction to me and my situation. I have been caring for my Mother for almost 8 years now. Mom’s dementia has progressed from repeating herself endlessly to a point I wanted to run head first into a wall, to where we are now. She is in good physical shape outside of the dementia and her lack of strength and balance. She still walks but only while holding on to someone’s hands, she is bent so far forward that I fear she will fall on her head any minute. I work, so we have a paid care giver come into the house gets her up and ready for the bus to take her to day care where she spends 4 hours a day during the week. Mom does not miss a trick, she is very alert to what is going on around here. She is easy to get along with and seems happy in any situation she is in, she is not frightened or uneasy at all. The care giver returns to our house and gets Mom off the bus and stays with her until I get home from work. In the evening it’s just Mom and me, and the 16 year old dog! Mom does not speak much and when she does her words are unrelated, so communication is a problem. She will feed herself maybe 60% of the time, we feed her as well. She doesn’t toilet herself or let us know when she needs to go. She likes Mylar Balloons and folding cloth napkins. She can’t get up from the bed or chair, we have to lift her to a standing position. I have NO idea how I will manage her when she can’t walk anymore. At that point I’m not sure I will be able to manage her at home at all, hate that thought! Any tips on that condition would be greatly appreciated!! We have a lift recliner and a hospital type bed for her. At night I put down a rubber mat beside her bed just in case she tries to get up, I think we are beyond that, but you never know. She has started to put inappropriate items in her mouth, crayons, and parts of stuffed toys. I put together a “work board” for her that sits across the arm rests of her chair, which holds all of her toys and stuff to keep her busy.

Take Care,

macbeth

Posted by @macbeth, Sep 18, 2016

@tsoy

Thank you for your information. When the time comes to get someone to help at home, such as a paid caregiver, to enable the main caregiver to run errands, keep appointments, etc., how do you find someone for that service? We live outside of a small town. Is there some sort of agency? Is there a choice? What if the person you get is not a good match - for instance, if there are trust issues or if your vulnerable adult finds the substitute caregiver irritating?

IndianaScott

Posted by @IndianaScott, Sep 18, 2016

Good morning @macbeth. You bring up an important issue. How to vet any potential help. In the early days of my wife's caregiving needs, I was still able to work and so we needed a paid care person in our home during those times.

I am sure each area and community is different, but here is what we went through and some of the things I learned.

I give this information only to educate and perhaps forewarn. I am sure there are far more great stories of folks getting great help than what we experienced.

I used a local agency. Our Agency on Aging had a list they shared with me. My wife's caregiving needs were high demand, so it was challenging to find someone. She needed companion care, not skilled nursing care. Many agencies I called would absolutely not provide transfers during the day, or did not want a patient who was 'active' in her daily routine. My mother-in-law had far less problem getting care folks as she was bedridden and unable to communicate, etc. and there were many more folks willing to help a person in her condition than there were who were willing to help my wife in hers.

I went though local, for-profit agencies in the hopes that it would provide 'back-up' if a caregiver got sick, called off, etc. I hated the fact I had to pay $25.00 an hour and the person actually doing the work only got about $7.50 of that, but it is the business model they use. All these agencies were franchises and the quality varied greatly! I suggest you review the agency owner as well as the caregivers they send! They promised big, but delivered far less. I also learned, in the case of the seven agencies we went through, they really didn't investigate/review/train their potential workers.

Be careful! We had many, and I mean MANY, terrible experiences both with agencies over-selling their abilities and we had even more 'iffy' caregivers. Some of these people abused my wife emotionally, threatened her, stole from us, extorting my wife, and one resorted to robbing and ransacking our home the day after I fired her for abuse. Some would just not show up, some would come for a day or two and disappear. They sent one who was struggling with mental illness, which they knew but didn't tell us. She stole and took some of my wife's medications and had a mental crisis while caring for my wife. My wife had to call 911 to get the cops to come (she was telling my wife her family were all dead and dismembered in our garage), but when the cops arrived they called me too since they said 'we can't tell who the crazy one is here and who the patient is."

Given those kinds of experiences, I was too scared to use Craig's List, etc. for people but I have been told some folks do and have great results.

I advertised in our local paper (using a PO Box for replies) and only got two responses over three months of advertising. Neither ended up even showing up for their interview.

Our church did not provide any resources for caregiving due to potential liability.

I finally was successful in getting one good care person through a personal recommendation from a nurse at our hospital, who was absolutely wonderful. She was with us the last nine months of my wife's life and was very, very good. I paid her less than what I had been paying the agencies per hour, ($18 vs. $25) but she got it all and was comfortable with that.

As I said this were only our experiences.

So vet any potential agency, then do it again, and again -- then vet the worker they send too, just to be sure you know what you are getting.

Peace and strength.

tsoy

Posted by @tsoy, Sep 18, 2016

@macbeth
When and who to get home help from is a GIANT question! I started with a middle schooler who was a neighbor friend. She would stop by the house on her way to school and make sure Mom took her pills and ate the breakfast I left out for her, at that time that is all we needed. When it became nessaccary for more help I decided to go with an agency. There are pro and con to both private and agency care givers. An agency will vet their employees, background checks and such, they match your needs with the care givers skills, when there is a need for a sub the agency will provide one. The agency is also insured, so if anything happens in your house that is covered. In my community we have 2 national agencies that provide care givers, NOT medical care, that is a different deal altogether. Both charge the same amount, we pay $18.50 an hour, and yes the care givers don’t get much of that. You might so on line to search for an agency then check if they are in your area, AARP web page might direct you with that. The agency I went with was able to provide a care giver right away, we did not have to wait "until they found someone". Checking with your local council on ageing is a great idea as well. Starting WELL before you need the service is a great idea! I hope I don’t have to place Mom in a facility, but I think I need to start looking at them now, if only to educate myself.
@indiana Scott is correct there are many potential problems to overcome. My experience has been positive with the agency care givers overall. I did have one that decided after her first visit that Mom was too much for her. The first care giver we had was with us for 2 years and she was great. We have a new one now that I think is going to work well for us as well. I have been able to meet each care giver BEFORE they started caring for Mom. As Mom's needs change we may have to change care givers due to their skills.

I also installed a camera system in the house, at first to keep track of Mom when I was away, now I can look into the care givers as well.

I just want to mention that if anyone is caring for a Veteran or a spouse of a veteran you MAY be able to obtain a VA benefit called Aid and Attendance, the Vet must have been in service during certain periods of time to qualify and there must be a monetary need. I have recently completed the process for my Mom and it is going to help with expenses, but it is the government so it’s a paperwork nightmare! Worth the effort if you qualify though!!

ladycat, Debby - @tavi, macbeth and 1 others like this
rmftucker

Posted by @rmftucker, Sep 18, 2016

It was about three weeks from the time we had the appointment with the VA until we had our first visit from our Respite worker. I was surprised at how quickly the director interview was scheduled and how quickly she assigned someone. Some of our other experiences with the Veteran Choice program have not been as speedy.

macbeth

Posted by @macbeth, Sep 18, 2016

@rmftucker Thanks! Good to know! I know the Veteran's Choice program is rather cumbersome. I've heard they're working on it.

ladycat likes this
macbeth

Posted by @macbeth, Sep 18, 2016

@tsoy Oh my gosh! Thank you so much for the leads!

tntredhead

Posted by @tntredhead, Sep 19, 2016

I am dealing with caregiving for my husband who has Parkinson's and dementia. I had the same problems with caregivers when I was hospitalized due to a heart attach. The people the agency sent (I was arranging for care for him from the hospital as we have no family in the area). They sent young, inexperienced people who would bring my husband to visit me for ten minutes and then when they left tell him they had to take them out to dinner and buy them cologne. Like you, my church was of no help. I finally found one caregiver who was great but after about six weeks she decided she didn't want to do that anymore. My husband is now in a skilled nursing facility after an unexpected hospitalization in a town 500 miles from where we live. I wish you the best of luck but if you find a way to find a good in home care giver, please share it. I'm scared, alone and at my wits end because I want my hubby at home where I can make sure he is cared for.

macbeth

Posted by @macbeth, Sep 20, 2016

@tntredhead. Oh my gosh! How awful, and how scary! I'm so sorry about your circumstances, and hope you are able to move your husband back home soon.

I have not yet been able to begin to check on in-home care. My husband has had out-of-town medical appointments scheduled for yesterday and today, and that has taken up the day yesterday, and will today, too. I will try to share whatever I learn when I do learn anything. I'm saving my questions for the VA, until his next appointment, late next month, but may begin to look around locally yet this week. There's just so much to do every day. It's constant. But, I will share whatever and whenever I am able.

ladycat and Debby - @tavi like this
IndianaScott

Posted by @IndianaScott, Sep 20, 2016

Hi @tntredhead! Good to get to e-know you here. I wish you the best with your husband, his care, and your care too! You are indeed plowing a tough row right now!

It makes me sad (and angry) to read the fact others have had, or are having, some of the same experiences my wife and I did with her caregivers. I believe someone is selling a very faulty business model for caregiving 'companies'! Someday I should sit in on one of their sales pitches and see how much they emphasize the need to be providing crucial services for families in need of a crucial service and how much they are selling profit potential!

If you have a hospice organization in your hometown, or one that serves your hometown, perhaps they might have some suggestions of aides or CNAs who are available for work. Or ours at least had a comprehensive list of service providers.

Peace and strength!

safetyshield

Posted by @safetyshield, Sep 22, 2016

Can you go to your nearest hospital and ask for a list of caregivers for your husband? Or any agency that deals with seniors. You should not have to go to unreliable resources and eventually let you down

ladycat likes this
macbeth

Posted by @macbeth, Sep 18, 2016

Wow, @IndianaScott! Although my husband is not yet at that stage, maybe I should start checking things out now! Having worked in the court system for quite a few years, I was afraid of some of this. Thanks for the 'heads-up'!

IndianaScott

Posted by @IndianaScott, Sep 20, 2016

@macbeth -- it might be worthwhile to at least do a bit of a review of some of the local agencies. Checking the BBB ratings, etc. when it is not crunch time.

Peace

tavi

Posted by @tavi, Sep 18, 2016

@macbeth -- starting before you need someone is a very good idea. My heart goes out to Scott and the terrible experiences he and his wife had.... I believe the problem in finding quality care is a direct result of the business models we're dealing with. Finding care givers is one of the challenges I've faced in the last six months -- I wanted to use an agency so that I didn't need to deal with advertising, interviewing, etc. etc. I started before I thought we needed someone since I knew it would be much easier to interview / vet an agency before a crisis. The manager I talked with at the first agency seemed very understanding and provided a good introduction to the services her agency could provide -- at that time I knew NOTHING about what I was looking for or what might be available so the informational interview was great. A couple of months later when I thought it would be a good idea to start, I recontacted her for help. That was when things got a bit more difficult -- they 'needed time' to find a person who would "fit" our needs (over selling??), and when they finally found someone (two weeks later) I asked to meet the care giver they wanted to provide before she came to our home. I was then informed that I would have to pay for her time at the meeting/interview. Oh my, that money was well spent and I am so glad I said yes -- when I went to meet the candidate I knew immediately that much of what I had said about my husband and our needs had gone unheard! The woman was nice but within 2 minutes I knew she and my husband would not get along. I really don't understand how folks think the model of sending someone unknown to your home (standard model) can be successful for long-term in-home care -- and my husband certainly does not need to go through more stress than he already is dealing with. When I rejected the candidate the agency said they would continue to look and then a week later told me they would not be able to care for my husband because he would be too challenging..... Oh my again, I understand there are challenges in caring for people with dementia but if that is one of the services they say they provide I would expect them to be able to meet the challenges. Desperate, I turned to another agency -- this time my time frame was NOT what I wanted - no vetting - but they had someone ready to come to our home in two days and I decided to move forward ( I had also talked with a more senior person at the agency during our initial interview). We have been blessed with one adequate and one excellent care giver -- I have the advantage that I have been able to be home to monitor the initial visits and how my husband is reacting. (Introducing/integrating the caregivers into our home life has presented challenges and worthy of a completely separate post - you are wise to be thinking about that already!) We now have the excellent care giver (who is also a CNA) coming four afternoons a week and I am looking to add someone else, possibly with a couple of overnight shifts since neither my husband nor I are sleeping very well.

Reliable coverage in the event of illness or a care giver's vacation is always a concern. Given that we now have good support from an agency that could provide backup resources in an emergency, I would also consider adding someone working independently to our team.

Wishing you the support, courage and resources you need on this journey.

ladycat, nanax2, Scott, Volunteer Mentor and 1 others like this
IndianaScott

Posted by @IndianaScott, Sep 18, 2016

Oh my, @tavi! All the agencies must not only follow the same business model, but also the same script with their clients!

'Fit' with the patient is the most crucial aspect and yet one their model ignores more often than not!

Thanks for sharing!

ladycat likes this
macbeth

Posted by @macbeth, Sep 18, 2016

Wow, again, @tavi! Thank you! Since we live in a rural area near a small town, may I ask whether you are in a larger town or city? Did you go through a local nursing agency, church, etc? I know I need to just begin to make phone calls, but I am wondering if there is something I'm not thinking of. But I think I have a couple of ideas of where to begin... Oh my. And I remember, while working in the court system, how several people came in, who listed CNA at one of the local nursing homes as employment, of whom I can only say I thought: "Oh man, don't they do background checks, or are they just that needy for help." I don't want to be unfair. I know a lot of kind, good people, too, who have held those positions, but the bad ones just should not be kept on, but often are. And, so, when looking for in-home help, I will be running all names through our local sheriff's office, asking for a state-wide, or national background check Still, people sometimes slip through, but I plan to do what I can, first, to protect both of us. I'm thinking that the VA clinic in a small city near us may be helpful. I would like to clarify, too, that my previous complaints about the VA, dealt more with admission of Agent Orange exposure related diseases and damages. I have found that they otherwise try to be helpful, generally. So, they might be a resource. I'll check them out, too. Thanks again for your advice and warnings!

tavi

Posted by @tavi, Sep 18, 2016

@macbeth - it sounds like you are casting a wide net - which is necessary! We live in a large city and I know there are lots of resources available to us that may not be available in other places. I decided to start with an independent agency since my husband's needs at this time are really focused on companionship (and respite for me) rather than physical health support. I'm slowly learning what is and is not available to us at this stage of his illness -- I've been in touch with our County government that has a public health group providing mainly educational support as well as one of our area's qualified Home Health Services group. The Home Health group provides nursing care along with occupational therapy, social services, etc -- their program has some specific requirements and are funded by Medicare. I have not talked with the VA... yet but know some folks have had great success with them. Frankly, figuring all of this out gets to be a lot of effort while also trying to be the primary care giver! .... which takes me back to one of my earlier posts ... the hospice model of full service care is a good one that I wish were in effect for people like my husband.....

Also, a personal challenge we are facing is that my husband sometimes does not recognize the need for additional support here at our home -- he flips back and forth between asking "why is she coming? why is she here?" to "is she coming today? are you getting help today? when is she coming?" His cooperation in receiving care and trusting additional care from someone is unpredictable due to the dementia -- I've learned that we simply must gently power through since I need the additional care!

tsoy

Posted by @tsoy, Sep 18, 2016

There is a VA program for home care for the Vet only, I can't remember the name of it. The second VA resource is for Vets and spouses, and it's called Aid and Attendance. I when through the paperwork nightmare to get Mom qualified for that one, it helps out and worth looking into if you qualify. Check out the VA web page.

macbeth likes this
macbeth

Posted by @macbeth, Sep 18, 2016

@tavi Your situation sounds so similar to ours. I, too, am looking primarily for a companion at this point, and expect the same reactions from my husband as you are receiving.

macbeth

Posted by @macbeth, Sep 18, 2016

@tsoy Super! Thank you!

rmftucker

Posted by @rmftucker, Sep 18, 2016

The social worker at our local VA clinic made the contact with a local elder care center well known in the area (one I would have chosen first) and after a visit with the director who came to our home for the interview with my husband present, we were assigned a worker who has been wonderful. She fits right in and takes my husband's banter well. He always gives everyone a "hard time" jokingly but it can get wearing when it is daily, but she just shrugs it off and gets the chores done. He has a huge attention problem and is very easily distracted, but she calls him to task kindly and we both enjoy her. I did stay around the first 2 or 3 times she was here to help her locate anything she might need and also to see what reaction my husband would have as she worked with him. I think that helped and I will be doing that again this week as our regular gal is taking a two-week medical leave and we will have a different worker for those two weeks.

macbeth

Posted by @macbeth, Sep 18, 2016

@rmftucker Good idea, to stick around for a time or two.

macbeth

Posted by @macbeth, Sep 18, 2016

Thank you all so much for this information and support! I really appreciate it!

caregiver49

Posted by @caregiver49, Sep 19, 2016

Fibbing can be helpful depending on stage. EXample; Your car is in the shop. The people in the house are helping me prepare it to paint, carpet. Etc.....you might have a friend that needs to stay with you until repairs are made on her flooded house and she is repaying you and your loved ones generosity by helping around the house. And you will be glad when she can go back home too. But now she needs our help. There is no end to helpful fibbing even though it might be only useful short term, even moments. When wanting to eat too often you might try dinner is in the oven, or you are waiting for the pizza man to deliver. My mom would brush cob webs from the house if I began to and asked her to take over for me while I had to tend to something else. Raking leaves is harmless too if secure from street. She would sometimes stay busy with it for awhile, giving her a bit of exercise. Music on a radio while outside may help them feel more connected to surroundings. When possible pick up lunch to go and save to heat up for dinner as lunch is much cheaper.Pastas, Thai, Chinese food reheat well. This will take some pressure off of caregiver and give some variety to all. I always agree and never say don't you remember? I'll see what I can do might interrupt the thought they are stuck on. This is a long, slow slog with few signposts. What works today probably won't work long.
Aside from this I just learned that depending on what state you live in, should you reach a point you need to have loved one move to care facility although after spending down to qualify the gov can recover what it spent on their care from estate after death. This started in 2009 I believe and is a change from how it used to be handled. Hope this helps@@

safetyshield

Posted by @safetyshield, Sep 22, 2016

Lying or fibbing to anyone can have its consequences. In my family experience lying is an easy out than dealing with the negative of telling the truth. But it has its down sides. Eventually for what ever reason my family lied to me, I always found the truth and that made me madder than if they bothered to tell the truth. As a child my parents excuse was it was for my own good. But as I got older the lying did not stop. It just became the easy way out. Even when I call out on knowing that they lied. They seemed not to either care or understand the consequences that lying on our family relationship. Even as a counselor when working with clients and their family I stress that lying will bite them in the butt one day, I believe that one should tell a loved one the truth. It might need some creativity and thoughtfulness but for you and others involved it would be emotionally satisfying. You can now rationalize about the lying but to you and others involved it will have an impact . With parents or loved ones that are losing their memories and get upset easily lying maybe the easiest solution for you but again it will impact your relationship with other family members, relatives, friends and yourself. If you need to discuss other concerns and would like to run it through this group please do. Your health is a concern for all of us on this connect network of concerned people

IndianaScott

Posted by @IndianaScott, Sep 23, 2016

@safetyshield I agree. Lying just leads to some really tough situations, especially in caregiving. I always made sure I told the truth. I may not have gone into all the tiniest of details, but I never wanted anyone to come back and accuse me of not sharing. Plus there was always a huge amount of sharing of what I said to anyone between folks so they 'compared notes' on me constantly.

When it came to my wife we made a pact very early in her journey she could always count on me to tell her the truth. It eased her worry a bit.

And on an unrelated, but related note, coming from a very dysfunctional, alcoholic family communicating was not always my powerful suit -- but I sure did realize lying just screwed up all communicating to the point of damaging yourself and others.

Peace and strength,

julz

Posted by @julz, Nov 24, 2016

Hello & thank you . I'm JULZ.
I am the sole caregiver & POA for my 86 yr old Mom who has frontaltempral dementia , congestive heart failure , fluid in her lungs as well as inoperable breast cancer in both breasts as well as behind her bladder, & glaucoma.& arthritis
It has been quite the journey over the past two years starting with the Alzheimer's.
Some days it is very overwhelming for me.
Mom is a happy person ( which I'm very thankful for). We have always had a very good relationship. Me being the oldest of 5. Mom trusts me in everything.
Having the Alzheimer's seems to have been a bit of a blessing with all else she is going through because she doesn't experience the pain most would have Except for the arthritis in her knee.
It is extremely difficult to watch Mom going from a independent active woman to the attitudes etc of a four yr old.
Someone was asking about music. I do find that putting on soft background music helps Mom especially during early evening " sundowning" time. Being able to see outside helps as well. I have her lazy boy placed in the front window so she can watch the street activities & can comment on them.
I always tell Mom the truth about what is going on & why we are going places. But like a child. If she drops it so do I. It was difficult during the move to my home from hers but she did realize it was time. Something that helped then was her Alzheimer's Doctor told her that she was going from a family of one to a family of three & that she was very lucky to have myself & my husband to include her in our home. Mom refers to that from the dr often.
One thing I have been trying to do daily is find humour in life for her. Getting her to laugh at simple sayings , visuals etc. Even when I feel like crying I strive to bring her laughter. Laughter is good for her sense of being as well as mind.
Just typing this out has made me realized I can do this. Thanks for the airing. Lol

Debby - @tavi likes this
safetyshield

Posted by @safetyshield, Nov 24, 2016

julz your mother is very lucky to have a person like you so caring and most of all there. I am sure she knows But as you know you can use some TLC yourself and you will find I hope what you need on conversation. Please keep writing no matter what you have to say. Know you will get a response. Keep strong

Please login or become a member to post a comment.