1. < Caregivers: Dementia
Mentor

Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

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.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

michiganstressedlady | @michiganstressedlady | Feb 26, 2017
In reply to @tsoy "Here is a more detailed introduction to me and my situation. I have been caring for..." + (show)
@tsoy

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,

Jump to this post

@tsoy One thing I can think of when she is bedridden is that you do some reading about CNA's ...I mean that there are helpful tips in the teaching books to be a CNA that will help you change bedding , how to move her , and how to do her daily care needs, when she becomes bed ridden and keep you safe from getting infection yourself or getting her sick I hope this helps . You may also find things in there about disease and how to distract , handle , and generally help you to help her. ....You can probably go to book store or library and find the books you need . If not call your local school for CNA, they are in most city's and ask them if they can give you one , loan you one or give you students name or you leave your name in case a student who has recently graduated has a book they will let you have or buy cheap . A railing may be needed for her bed so that she doesn't get up or fall out of bed .One last thing is a Hoyer which helps move her from bed to chair or into tub or wherever , also with bed changing this can help, the CNA book might show all about this also Blessings to you

REPLY
michiganstressedlady | @michiganstressedlady | Feb 26, 2017
In reply to @macbeth "@tsoy Thank you for your information. When the time comes to get someone to help at..." + (show)
@macbeth

@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?

Jump to this post

@tsoy , you can also ask your local CNA school who did really well in class and is looking for a job , You will know they graduated and did well , and you will pay less as they don't have tons of experience , and don't worry that they don't have experience as when I graduated I was ready to do the work and each patient is so individual anyway that it doesn't matter so much about experience. you may find help that way .Just an idea ..wish you well

REPLY
TNTRedhead | @tntredhead | Feb 26, 2017
In reply to @macbeth "@tsoy Thank you for your information. When the time comes to get someone to help at..." + (show)
@macbeth

@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?

Jump to this post

Thank you for the idea of the CnA school.  I don't know if there is one in our area but I surely will check it out this week.  TrishThe Redhead

REPLY
michiganstressedlady | @michiganstressedlady | Feb 26, 2017

Today is a bad day ...He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don't really care so dropped it , but he an hr later is still going on and obsessing about it ...he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn't work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn't file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn't and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today ...any suggestions appreciated .

REPLY
9 replies
TNTRedhead | @tntredhead | Feb 26, 2017
In reply to @tsoy "Hey There, I just joined, I care for my soon to be 94 year old Mother..." + (show)
@tsoy

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.

Jump to this post

@michiganstressedlady, I take care of the smell of "diapers" in my house by having a trash can just outside the back garage door.  I keep plastic trash bags in it and when its trash day, just close up the bag and put it in the big trash can for pick up.  Now this may not be the best thing for the environment but it is the best thing for my home.Also, you can find the flame less candles - one company is Scentsy - and NO I DONOT SELL THESE but they also have other brands at Walmart.  I use these as it saves me the worry of having open flames in the house and it never gets hot enough to burn you, your mate, or your pets.@TNTredheadThe Redhead

REPLY
TNTRedhead | @tntredhead | Feb 26, 2017
In reply to @michiganstressedlady "Today is a bad day ...He has argued with me sense he got up , non..." + (show)
@michiganstressedlady

Today is a bad day ...He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don't really care so dropped it , but he an hr later is still going on and obsessing about it ...he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn't work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn't file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn't and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today ...any suggestions appreciated .

Jump to this post

IF, at all possible, have someone set with him today and you go out to a movie, to visit a friend, to church, anything just to give you a break.  If you can't do that, when he takes a nap, go light some candles in the bathroom and take a long bath and DO NOT think about your life while you are soaking. Just relax and give yourself a break.  My heart breaks for you as it does for all of us but we will make it - how???  I have no idea but we will survive.  We are all strong individuals who truly love our mates.The Redhead

REPLY
michiganstressedlady | @michiganstressedlady | Feb 26, 2017

thank you for the inspiration @tntredhead , you are greatly appreciated , I will try to do that , I have a friend coming over later and maybe they can stay with him for a bit while I go anywhere, nowhere, I don't care but out of here, blessings to you

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Feb 26, 2017
In reply to @michiganstressedlady "Today is a bad day ...He has argued with me sense he got up , non..." + (show)
@michiganstressedlady

Today is a bad day ...He has argued with me sense he got up , non stop about silly things such as how to frame a picture he has , its of an eagle and a wildlife pic so I suggested not having matting around it , but he insist and I don't really care so dropped it , but he an hr later is still going on and obsessing about it ...he says he is going to take a nap but has been up sense he has said that and non stop eating, I tried distraction and that didn't work , his mind is set on non stop food , food , food, ugh so frustrating ! He also has brought up things I cannot do anything about over and over again from the past ??? Like me not filing for disability myself , I didn't file because I have needed to take care of him with my fibro and it hurts like heck but I manage, and if I wanted to get caretaker fee I cannot file for it myself but he has gone on and on about how I should have and we would have money if I would have , and etc. over and over again , I told him he is obsessing about it and that its over with I didn't and we cant change it , but he wont stop telling me how stupid I am , His FTD is terrible today ...any suggestions appreciated .

Jump to this post

Hi @michiganstressedlady Sorry to hear it is a bad day. Those are really a challenge for sure! One of the most difficult things for me to come to peace with was the fact dementia causes our patients to not think logically, when we, as their caregivers, are trying to logically figure things out!

As I often said to family members "I have to be very careful in picking my battles." I went through days and days of "yes, dear" --
"no, dear" and not much else in the way of responding. I also began to ask my patient immediately 'what do you think?' or 'which would you like'. This gave me a mechanism to respond to their suggestions and a response of 'I agree with you' as often as I could.

Just my experience though, so your case could be very different I understand.

Peace and strength

REPLY
michiganstressedlady | @michiganstressedlady | Feb 26, 2017
In reply to @macbeth "@tsoy Thank you for your information. When the time comes to get someone to help at..." + (show)
@macbeth

@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?

Jump to this post

If you cannot find a CNA school in your area there are books that CNA s use for learning and you can probably find them in book store or even read on line ...they teach CNA s to deal with patients and sense us caregivers need to do that I would think they would be helpful to us ...I was a CNA for 25 yrs so I know my training has helped me a lot . I still refer to my old books just to brush up on safety and help with dealing with difficult patients ....such as my BF ...If you cannot find a book , I will try to find the title for you . I don't have my books right now as a friend is borrowing to help her father with his problems ...I will give her a call though if you need me to . Much strength and blessings @tntredhead / Trish, My name is Debbie btw if you need to talk I am there for you as are all of us here. Its a great place to get help and to vent .

REPLY
michiganstressedlady | @michiganstressedlady | Feb 26, 2017
In reply to @macbeth "@tsoy Thank you for your information. When the time comes to get someone to help at..." + (show)
@macbeth

@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?

Jump to this post

https://www.amazon.com/Mosbys-Textbook-Nursing-Assistants-8th/dp/0323080677/ref=sr_1_9?ie=UTF8&qid=1488134560&sr=8-9&keywords=cna+books try this site , it has the book I used and has a ton of usful info @tntredhead / Trish

REPLY
View MoreView Less
Please sign in or register to post a reply.