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.

@colleenyoung

@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

Jump to this post

@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.

Liked by ladycat

REPLY
@colleenyoung

@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

Jump to this post

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.

REPLY
@colleenyoung

@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

Jump to this post

Thank you so much!!!!

Liked by nanax2

REPLY
@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.

Jump to this post

Me too. Alzheimer’s disease

Liked by macbeth

REPLY

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

Liked by Debby - @tavi

REPLY

My husband is in middle stages now, and in retrospect I think he has had it for some time. He never communicated with me well, so it was hard for me to detect, and I guess I didn’t want to believe it. His mother had it but she was close to 90 years old and passed at 93 in 2002. I think the real clue was/is that his dad, who was quite a bit older than his mom, had it too, way, way back, in the 50’s and I think his dad got it early but it went undiagnosed, he was just “mean” and “crazy”. His dad passed at 69 I think in about 1963 or so. My husband is 77 now. I am quite a bit younger. It is very hard. He is in denial. I get very frustrated.

REPLY

Welcome to Connect @pearlandpeacock. @julz just joined our community of caregivers today too.

Julz, great tips about moving your mom to your home, about music and giving her a view of the street activity and so much more. Interesting that in sharing these ideas you put into action help you realize how adept and creative your are. That is the power of writing and sharing in a community like this one. We can so often get caught up in the constant reacting to the needs of the person that we care for that we overlook our accomplishments, especially since the needs constantly change.

PearlandPeacock, you’ll have read in this discussion that a few other members like @IndianaScott @lindabf @rmftucker and @macbeth have experienced a long period of their partner being undiagnosed and denial. Has your husband now been formally diagnosed? You have a great group of people here who understand the frustrations. Please feel free to share and vent as needed.

REPLY
@julz

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

Jump to this post

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

REPLY
@pearlandpeacock

My husband is in middle stages now, and in retrospect I think he has had it for some time. He never communicated with me well, so it was hard for me to detect, and I guess I didn’t want to believe it. His mother had it but she was close to 90 years old and passed at 93 in 2002. I think the real clue was/is that his dad, who was quite a bit older than his mom, had it too, way, way back, in the 50’s and I think his dad got it early but it went undiagnosed, he was just “mean” and “crazy”. His dad passed at 69 I think in about 1963 or so. My husband is 77 now. I am quite a bit younger. It is very hard. He is in denial. I get very frustrated.

Jump to this post

Welcome @pearlandpeacock, you will find this is a great source to help you deal with frustration. Has your husband had a thorough physical from his doctor, neurologist, psychologist, etc? We discovered that much of the frustration, anger, and paranoia my husband was showing, was helped with Zoloft. It is a very low dose, but has made it much easier to help him.

He is 86 and had been experiencing falling episodes for a couple years. Of course, he wouldn’t go to a Dr. at the time and when I finally insisted something was wrong, he had a MRI which showed he had several small strokes, and also symptoms of possible Alzheimer’s Disease. He also had a family history of Alzheimer’s Disease. His grandmother, his mother and his aunt all lived many years with it before they became so incapacitated that they needed Nursing home care. The Veteran’s Administration Clinics have been very helpful with Social Workers to guide me along. They have provided equipment since he is now using a wheelchair and in home respite care since he can’t be left alone. All this since April, so it has been a rough summer. But family and friends have all been helpful.

REPLY
@colleenyoung

@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

Jump to this post

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.

Liked by macbeth

REPLY

Hi. I’m still not sure this is the correct way to start a new post or a new discussion question (thread) in the “Caring for someone with dementia or Alzheimers”group….But, I’ll give it a try 🙂

I’d like to ask for some suggestions or advice on how to best keep my mom “busy” or give her something to do during the day. She never had any hobbies except reading or being with friends. Both are things that she doesn’t do or cannot do anymore. I need to care for all the daily chores and business of running a household while caring for my mom. I’m grateful that she’s still physically strong and in good health, but her Alz. has limited her ability and interest in doing almost anything except watch T.V. or an occasional chore (which usually becomes frustrating and causes anxiety because she can’t remember how to do it or where things are. The result is that she’s often bored. We’re also limited by the fact that we don’t have use of our family car on most days so mom and I are home alone together. If you read my earlier posts you can see more details about our situation. Any suggestions? Thank you!

REPLY
@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.

Jump to this post

@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

REPLY

@kmkm

We may be in the same stage, except that we do have the car every day. I would be interested in the suggestions of others, too. We often go for rides, or out for coffee, but there must be more!

Macbeth

REPLY

Hey kmkm,

Like you I am caring for my Mom, 94, and other than her mind she is in good health, though at 94 she doesn’t walk well and not at all with out help. First thing I would suggest to you is have a long hard discussion with your family members about helping you with caring for your Mom. I know you said they “give you a break once in a while”, but if other people are in the house, I think it should be a shared responsibility. It’s just me and Mom so I don’t have any family help. You might look into a senior center or elder care program in your area, we have WACOG, (Western Arizona Council of Governments) they are a great help with Mom. They pay for some hours for her to attend an Adult day care and arrange for transportation for her to go to the day care. Day Care is a great way for you to get some relief and “me” time. Where we live the Catholic Community Service runs the adult day care. My Mom can’t do the things she once enjoyed, but she has found other things to spend time doing, odd things. She will entertain herself with folding towels, or napkins, (I went to the $ store and bought several cloth napkins for her). She will spend hours looking at greeting cards and the envelopes they came in, she likes to look at the paper too. TV is a pastime for her, she likes the shows that show a lot of nature, outdoors, like national parks. I moved her chair so she can look out the window and see motor and foot traffic. Until recently she enjoyed batting back and forth balloons, and children’s jigsaw puzzles, and coloring books . She likes certain stuffed animals, you might try a baby doll. I made a “work board” for her that sits on her chair arms, she can place her “work” things there.
Hope I have given you at least an idea that will work for your Mom….Good LUCK!!

Liked by macbeth, KMKM

REPLY
@tsoy

Hey kmkm,

Like you I am caring for my Mom, 94, and other than her mind she is in good health, though at 94 she doesn’t walk well and not at all with out help. First thing I would suggest to you is have a long hard discussion with your family members about helping you with caring for your Mom. I know you said they “give you a break once in a while”, but if other people are in the house, I think it should be a shared responsibility. It’s just me and Mom so I don’t have any family help. You might look into a senior center or elder care program in your area, we have WACOG, (Western Arizona Council of Governments) they are a great help with Mom. They pay for some hours for her to attend an Adult day care and arrange for transportation for her to go to the day care. Day Care is a great way for you to get some relief and “me” time. Where we live the Catholic Community Service runs the adult day care. My Mom can’t do the things she once enjoyed, but she has found other things to spend time doing, odd things. She will entertain herself with folding towels, or napkins, (I went to the $ store and bought several cloth napkins for her). She will spend hours looking at greeting cards and the envelopes they came in, she likes to look at the paper too. TV is a pastime for her, she likes the shows that show a lot of nature, outdoors, like national parks. I moved her chair so she can look out the window and see motor and foot traffic. Until recently she enjoyed batting back and forth balloons, and children’s jigsaw puzzles, and coloring books . She likes certain stuffed animals, you might try a baby doll. I made a “work board” for her that sits on her chair arms, she can place her “work” things there.
Hope I have given you at least an idea that will work for your Mom….Good LUCK!!

Jump to this post

Thank you, tsoy. My situation involves being alone most of the time with my mom during the day…the other family members are either at work or at school. I’m not sure about the Adult Day Care option yet…mostly because I think my mom is still “with it” enough to know that she’d be with others who are probably a lot more confused than she is. And, she’s only 74 and not used to spending time with “seniors” at a special facility. I guess I was waiting for outside respite options when she less aware of the fact that she’s leaving home in order to give me a “break.” But thank you for the suggestions for the elder care programs–I’m sure I will be doing research for available options soon… And, regarding in-home activities, I like your suggestion of folding napkins. And buying greeting cards. I think she’d like that…and maybe I’ll ask our neighbor if we can have their old newspapers. Thank you. Any more suggestions?? 🙂
P.S. I bought a “life-like” baby doll that I’ve been saving to give my mom when it’s appropriate (I think she’s still too aware of the fact that it’s “just a doll” and may not enjoy it enough. But I think the day is coming when she may really enjoy holding it and feel comforted by it. She goes out of her way, wherever we are, to go see babies. In fact, I’ve lost her a few times because she’s completely fixated on small children and especially babies…

Liked by macbeth, sallysue

REPLY
Please login or register to post a reply.