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 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.

My wife Phoebe has Alzheimer’s and is in a care facility. She still remembers me and our daughters, and has many more smiles than tears. I can almost tell what she is thinking by her facial expressions, she can give me a real frown when I do something wrong. She and I were great fishing partners, and is one of the things I miss most!

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Be happy she smiles more than frowns! My Mother was that way too and as she was always a loving, giving person, more concerned about others than herself, she was intent on not making us feel guilty about her need to be in the nursing home. My DH still at home and I am just beginning to get some respite help on a regular basis. I know he will not like it but I am so near burnout it scares me.

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@erice

My wife Phoebe has Alzheimer’s and is in a care facility. She still remembers me and our daughters, and has many more smiles than tears. I can almost tell what she is thinking by her facial expressions, she can give me a real frown when I do something wrong. She and I were great fishing partners, and is one of the things I miss most!

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Hello @erice Nice to e-meet you here, but sorry to hear of your wife’s journey. It is wonderful she remembers her loved ones! Amazing what a smile can do for a fellow human being. So much pain, fear, and discomfort flees in a beautiful smile! My wife’s last genuine smile is still seared in my memory and is a fabulous light in my life!

Sorry about losing your fishing partner. This danged disease takes so much….

Strength, Courage, & Peace

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@ggramk

Be happy she smiles more than frowns! My Mother was that way too and as she was always a loving, giving person, more concerned about others than herself, she was intent on not making us feel guilty about her need to be in the nursing home. My DH still at home and I am just beginning to get some respite help on a regular basis. I know he will not like it but I am so near burnout it scares me.

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Hello @ggramk Congratulations on getting the respite care! Wonderful for you and over time I am guessing these helpers will be accepted as part and parcel of the regular routine. Change is always hard, but as I say of any disruption brought on by change… ‘a temporary inconvenience for a permanent improvement.’

Sending you some extra strength to combat those burnout feelings, which can be crushing to caregivers especially!

Strength, Courage, and Peace

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@ggramk

Be happy she smiles more than frowns! My Mother was that way too and as she was always a loving, giving person, more concerned about others than herself, she was intent on not making us feel guilty about her need to be in the nursing home. My DH still at home and I am just beginning to get some respite help on a regular basis. I know he will not like it but I am so near burnout it scares me.

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Thank you Scott. My DH was first diagnosed 6 years ago. Of late I have noticed a pretty steep decline. And unless you have walked these difficult miles yourself, you can not fully understand the agony of watching someone you love disappear before your eyes.

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All of us in the care business know how much just a small amount of time to divert from the everyday duties can mean. It is becoming very clear to me as a person who has been caring for my husband for eleven years, that there is a need for our government to get more involved with this problem. I just got back from Mayo, Rochester. Our cancer doctor since 2006 thanked me for the role as a care giver. He said the doctors need to understand and appreciated the role we play in the progress and living longer that patients are experiencing now. As our loved ones are living longer with the new drugs on the market, there is another problem that will crop up and that is the one who does the care is worn out over time. There are times when I am totally exhausted and overwhelmed. We have six hours a week of outside help and have been fighting the nursing home possibility.

Somehow there needs to be more help provided to keep terminally ill people at home. Each year and each month, more and more duties are heaped on the care giver. We are not nurses and have not the skills to do what is expected of us. But, somehow we plug along and do the job. What really kills me is when a nurse or aid tells me that what I am doing in the way of taking care of his diabetes meds is all wrong, but you know what, he is still alive and doing quite well, he is in his third remission and the diabetes is somewhat controlled. We need more support out here from the medical community. We do not bug the doctors unless there is something that is a serious threat. What we need is the day to day help with doing the mundane duties that are literally wearing us out. Yes it is hard to have people invading our private space but the help is so needed and I have two people in my life now that I would not have had the privilege of knowing otherwise. The people that do care giving as a profession are a god send and I love them for their devotion. I think about what life would be without hubby and that can be freeing but yet not a good deal either, I would really miss his sense of humor which he regularly uses on some of his more than stern nurses. That can be a hoot so there are the good things that go along with this long term care situation we find ourselves in at the present
moment. Sorry for the rambling but it is good to do once in a while. Hang in there caregivers!!!!

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@ozys

All of us in the care business know how much just a small amount of time to divert from the everyday duties can mean. It is becoming very clear to me as a person who has been caring for my husband for eleven years, that there is a need for our government to get more involved with this problem. I just got back from Mayo, Rochester. Our cancer doctor since 2006 thanked me for the role as a care giver. He said the doctors need to understand and appreciated the role we play in the progress and living longer that patients are experiencing now. As our loved ones are living longer with the new drugs on the market, there is another problem that will crop up and that is the one who does the care is worn out over time. There are times when I am totally exhausted and overwhelmed. We have six hours a week of outside help and have been fighting the nursing home possibility.

Somehow there needs to be more help provided to keep terminally ill people at home. Each year and each month, more and more duties are heaped on the care giver. We are not nurses and have not the skills to do what is expected of us. But, somehow we plug along and do the job. What really kills me is when a nurse or aid tells me that what I am doing in the way of taking care of his diabetes meds is all wrong, but you know what, he is still alive and doing quite well, he is in his third remission and the diabetes is somewhat controlled. We need more support out here from the medical community. We do not bug the doctors unless there is something that is a serious threat. What we need is the day to day help with doing the mundane duties that are literally wearing us out. Yes it is hard to have people invading our private space but the help is so needed and I have two people in my life now that I would not have had the privilege of knowing otherwise. The people that do care giving as a profession are a god send and I love them for their devotion. I think about what life would be without hubby and that can be freeing but yet not a good deal either, I would really miss his sense of humor which he regularly uses on some of his more than stern nurses. That can be a hoot so there are the good things that go along with this long term care situation we find ourselves in at the present
moment. Sorry for the rambling but it is good to do once in a while. Hang in there caregivers!!!!

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Hello @ozys Great post and thank you for sharing it. I found Connect when I was in the last year of being my wife’s fulltime caregiver for 14 years and was reeling from the isolation and feelings of being constantly overwhelmed by caregiving.

I agree with you about the need for there to be more recognition of the critical role unpaid, often family member, caregivers provide as absolutely necessary care for long term, chronic care patients. A recent study put the dollar value of the care we provide at an average of over $321,000! No wonder most normal families cannot afford the outside care that is truly needed to lift the burdens from caregivers!

I, too, laughed at how often I was criticized for my job as a caregiver. Like you, I found fabulous support from my wife’s neuro-oncologist at Mayo Rochester. He was totally the BEST and did realize my role and value. On the other hand I was all too frequently criticized by my wife’s GP, her nursing staff, and many family members for how I was doing things for my wife, things I wasn’t, and even my housekeeping skills, etc.

It was good to read how you enjoy the brief moments of levity thanks to your husband. Caregivers become expert at finding opportunities to take what I call “minute vacations” through those moments and other all too brief interludes! Wonderful to hear you also have found excellent assistance. That eluded us until my wife was prescribed home hospice care.

I send you strength, courage, and peace!

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@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

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I’m caring for my husband who is 75 and in mid-stage Alzheimer’s. He was diagnosed in December of 2013. For the last few/several months he’s had great difficulty staying awake. Days are the best for him. Around 5:00 or 6:00 P.M. he’ll say he’s going upstairs to take a nap usually getting up around 7:30. Then he’ll sit in his chair, we’ll decide what we want to watch on TV and as soon as I turn it on, he’ll be out! Often he doesn’t wake up until I’m starting to let the dogs out before going to bed. This is a very lonely feeling and gives me way too much time to think though I try to keep myself busy with reading, the crossword puzzle, etc. I’ve talked to the neurologist but haven’t been given much of an answer. Is this just part of the disease or can anyone suggest something that would interest him enough to stay awake a little longer. I understand TV can be hard when you’ve reached a point when following a plot is difficult which is another one of my problems–I don’t really know how much he follows as he does his best to pretend he’s following along. Enough for now. Thanks for listening.
Talie

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@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

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Hello Talie. Thanks for posting. My mother’s sleeping patterns have changed and she is often more tired than she used to be. This is just a suggestion, but maybe you could suggest to your husband that he lie down to rest (a nap) earlier in the day or after lunch instead. If he resists waking from an afternoon nap, you might gently tell him that you’ve prepared (insert something he likes to eat or drink) and it’s ready for him in the kitchen; or find something that you know he usually enjoys doing with you so he’ll be motivated to get up. That might help him to be a little less tired at 5 or 6pm. Let me know what you think.

Liked by mojo1965

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@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

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Hello @talie Nice to e-meet you here! I am Scott and my MIL suffered from dementia. I also worked for the national Alzheimer’s Association for several years. I was a secondary caregiver for my MIL and for 14+ years the primary caregiver for my wife during her war with brain cancer. I am sorry to learn of your husband’s health condition. It is never an easy path for certain!

What you describe with your husband getting tired, etc. around that time of day is very common with dementia patients. It is a phenomenon often referred to as ‘sundowning’. This change also occurred with my MIL and was something that did not change in her.

Unfortunately, with many chronic diseases, as they progress they change our loved ones in ways that are both very different from their prior styles in life and just as often are uncomfortable for us as their loved one and caregiver. Personally I think this is especially true when these are changes, which outwardly manifest themselves, as sundowning does.

How each of us, as caregivers, manage these changes can be as unique as each of us are and as unique as each of our patients are.

I found that there is no ‘one size fits all’ answer for these situations, but one of the great things about Connect here is the fact so many others have been through something similar in our experiences and can share what we did or what we’ve learned!

In my case I learned the course of the disease was something I could not control, alter, or change no matter how much I wished I could. But I learned I could try and alter my actions/reactions around difficult changes sometimes.

When my wife had a period where her sleep pattern changed and was peculiar, I used that time to do something for myself, which I couldn’t do when she was awake and needing me. As odd as this may sound, I altered this change, which had been getting me down significantly, into a time when I could ‘reward’ myself with something for me — which in our schedule was a huge rarity.

Good to have you here and welcome to Connect! I hope you enjoy Connect as much as many of us do!

Strength, Courage, & Peace

Liked by mojo1965

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@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

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Talie, my husband, 87, also sleeps most of the time that I am visiting him in the Care Center. He will wake when I first arrive and maybe say a sentence or two but in 10 minutes or so he is dozing off again. This continues most of the afternoon as I try to spend the afternoon with him at least 3 days a week. I try to go on days when I know the activity in the Commons will be something he will enjoy and I encourage him to go. He will go and enjoy it if I’m there, but usually refuses if I am not there. Then, of course, as soon as we get back to the Memory unit he is really worn out and spends the rest of the afternoon sleeping. I always take a long something to occupy my time. I am a knitter and reader so it is not difficult to find something easy to take with me.

I know it is different when they are at home with you. We always kept soft music playing. Something that he liked. He was a polka fan, so he had CDs that would play for almost a hour, and we just played them over and over every day. It didn’t seem to matter to him that he heard the same ones. This seemed to calm him.

I think the extra sleeping is part of the advanced stage of the disease from articles I have read. Just try to find something that you can do and still be with him.
Stay with us. These people have so many good ideas, and always are encouraging.

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@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

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Thank you so much for your suggestion. It’s an excellent idea and I will definitely try it. I’m so happy I found this site and the knowledge that many people are struggling with similar issues. When I started writing last night, I was only planning to write a few sentences then found myself going on and on. Obviously, I needed to vent and it felt like a great release when I did. I was also comforted by the thought that the next day I might find some suggestions for my problem or at least some people who were experiencing the same issue–sometimes that feels just as good. Appreciatively, Talie

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I read your posts on this site often and always find them a great source of comfort and kindness even if the topic doesn’t apply to my exact situation. It appears like so many of us are struggling with one issue or another!

Talie

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@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

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My sister had the opposite problem with her late husband who had Alzheimer’s. He hardly ever slept & if he did he would sleep standing up against a wall for maybe 10-15 minutes at a time. Everyone is different & this is particularly true for Alzheimer’s depending on which areas of the brain are affected. Has he had any new meds? Does he sleep through the night or does he have sleep apnea? At this point he probably doesn’t follow the plots on TV. At least this was the case with my brother-in-law. I pray for all caretakers especially the loved ones of Alzheimer’s. God bless you talie.

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@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

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Thank you for your response.  My husband isn't taking any new meds but the neurologist did say that the medication he is taking could be part of the problem.  He sleeps (in bed) from probably 11p.m. until 6:00a.m.   He does have sleep apnea and wears the required headgear which seems to really help with the quality of sleep he gets.  I really do know what you mean when you say each case takes its own course.  When something changes, I wonder if this is going to be the new normal or will we go back to the way it was before.  This is probably my denial and/or wishful thinking.

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