Caring for someone with dementia / Alzheimer's

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

Thanks for the great idea, @colleenyoung. I think a specific group and 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.

@kmkm

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.

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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 ,

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@kmkm

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.

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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!

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@kmkm

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.

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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 !

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@kmkm

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.

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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.

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@kmkm

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.

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

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@ladycat – Our situations sound so very much alike and I can relate to everything you are saying. My doc told me again this week that I can’t bring my hubby home for at least another 3 weeks as it seems the infection is still in my body so I am not gaining energy like I should be. It is coming to the point that I must make a decision as to what I am going to do. Plus I have the decision as to whether or not to go on with the construction the VA wanted me to do on thehouse to build him a new bathroom and make it easier for me to get him in and out in case of an emergency. Then the VA just awarded me a few hours of care each week for him so trying to figure out how I can/if I should bring him home is killing me. @ladycat, hang in there and know that I will include you in my prayers.

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Goodness this is so hard , I am saying prayers for you all

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@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.

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Puppy pads work well for males ( I believe this would help females also ) who cannot hit the urinal or who have bed wetting prob. ,,,,I use them instead of the adult pads for the floor as he misses a lot and could be very messy, also when on commode he seems to urinate and it would make a mess, so putting one in his underwear and under him while on commode helped a lot .He has a few bed sores as he watches tv non stop all day , and I have to use the thick butt cream which is hard to clean out of clothing , so I put one of the puppy pads in underwear so it doesn’t get all over everything else …and they are less expensive then the adult ones . you get more of them also in a pack then the adult ones, ..Some of them are scented, I also found at the dollar store baggies to put in the commode which are rose smelling (they have other scents too ) I put the scented one is on the outside with the other clear baggie , which helps a ton with the smell, Its so embarrassing to have the house smell. You can also use the baggies to keep soiled cloths in until wash gets done, I also almost always have scented candles burning , this helps a lot ! Still haven’t figured out how to shower him though. I have the VA coming out this thurs to evaluate our bathroom so maybe get a walk in shower as he cannot stand long , and cannot lift leg up over edge of tub, I have been giving him baths while he sits on commode, which is ok but I want him to be able to shower , we all know how much it makes us feel better I cant imagine not being to sit under shower , it feels so good .,I tried the shower chair and because our shower is in a trailer and because he is so large they don’t fit in , and hang out by 2 feet , The pads also work awesome for putting under him while washing him , or shaving …they soak up a ton of water..I used them on a ceiling leak and the pads weighed a ton when done , they must hold a gallon of water …( just a hint in case any of you want to use for leaks, or spills ) … He wants to start taking all these vitamins now because he says it will help his brain…Does anyone know if this is helpful ? I do not believe brain cells grow back , is that true ? I told him he eats enough already and doesn’t need to eat vitamins also , they are expensive , and he argued with me saying he would re build his brain…Do I just let him believe what he wants or should I tell the truth ..If what I believe is the truth that brain cells do not grow back ?? I have heard you can build new pathways in your brain , is that true ?

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@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.

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Oh my goodness you are creative. Hey do what works I say. Stay strong. Don’t hurt yourself. 

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@annie33

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

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I would like to tell you that he will get over it but he wont, so instead I offer my deepest prayers to you both . I believe that if he is not comfortable going out that he should be able to stay in ….If you love to go out then by all means go …its good for you to take a break , and if any thing causes him to have attacks then you should try to avoid them , as he will be happier that way and you will be less uncomfortable worrying about his attacks ….We cant change how they feel , most of the time , and anxiety is a difficult one to change , and I don’t know how bad his Alzheimer’s is but being he is in a home I am guessing it isn’t well The Dr. probably said no because any med that effects the mind will not help and in some cases hurt them more. I hope this helps you @annie33 Phyllis .. Alzheimer’s is I believe a disease that causes anxiety with any change and the person who has it loves and needs structure , so going out is probably making things more difficult for him and for you .Instead maybe you could try taking him just outside and having a picnic or bringing food in and eating there , that way no anxiety and you still get to spend time together . I hope this helps, and I am new here and do not know a ton about this but from what I have read, My BF has bvFTD so it is Dementia but personality Dementia. sort of …I am still learning myself and you are in the right place for support and also to vent Huggs to you Blessings

Liked by ladycat

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@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,

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@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

Liked by ladycat

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@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?

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@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

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@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?

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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

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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 .

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@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.

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@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

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