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Though I am a principal caregiver for my 89 year old mother, it is my 91 year old father who is her primary caregiver. They both live at home. Mother has moderate dementia, still recognizes familiars and is mobile on a walker, but has no immediate recall and an 'OCD' habit of repeating the same questions over an over. I know that my emotional journey is hard, so I can only imagine what it must be for my father. They have known each other since 2nd grade and have been married for 70 years. The dementia is a 'recent' development over the last 7 years and not how either of them (or us) imagined their 'golden years' together would end.


I do everything I can to help - meals, time, driving to dr appointments - but I see the hurt and frustration my dad has dealing with problems that he can no longer 'fix'. He's lost his love, his friend and companion. This is different than me losing my mother...I still have my soul mate for support.


If anyone can offer advice, websites, books, anything that I can share with him to maybe ease his heart a bit I would be eternally grateful.


Trying my best...but feeling helpless.

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Thank you all for taking time to respond. I have spent lots of time reading up on this horror of a disease, including 'The 36 Hour Day'. I found 'Dementia With Dignity' (using the DAWN method) very informative too. I have hired a caregiver (more for companionship) for a few hours a day, 5 days a week, that helps give my dad time to relax and get out without worrying about my mom. Plus she has someone to help keep her mind busy rather than sitting around doing nothing all day. With the Covid, it's been very difficult to get either of them out and about, but hopefully this year will bring a reprieve and make outings more doable again. He has a few good friends and family that stop by for visits on fairly regular basis, but the Covid has definitely limited the scope of these visits...especially during the winter season when they have to take place inside.

At present, there is no way he is willing to consider a facility. He told me once, 'There's a reason the Lord let me live this long...because he knew she was going to need me...and I'm going to be here for her as long as I can.' I love this man and understand his devotion. I will continue to look for ways to ease his burden and this forum has truly been a Godsend.

Thank you all again and please keep the love and advise flowing.
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Llamalover47 Feb 2021
MamaChar: You're very welcome.
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MamaChar: I would give myself as much information on the disease of dementia as possible. Start with the book, "The 36 Hour Day." Then you will be better able to understand that your dear mother is not OCD, but has a brain that is broken and can't be repaired. Prayers sent.
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You have to face the fact she has dementia and it will only get worse and cause more problems for your father and for YOU. It is time to remove her and place her into a facility and remove this burden from you and your father. It is just not right to let him carry this burden any longer.
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MamaChar, kudos to you for helping your parents as much as you do. The first book I read specifically for my dad's Alzheimer's dementia was "The 36-Hour Day." This book is a practical guide for understanding and coping with dementia and is readily available on-line (new or used). Several copies of this excellent resource were given to my dad's children by his gerontologist doctor. Not all eight of us read it, but it certainly helped me understand what was happening to him and what I needed to do to help him, especially after my wife and I moved him from a neighboring state into our home where I became his 24-7 caregiver for the next 3.5 years. For the last 1.5 years of his 97-year life, I visited him at least daily in the best memory care facility I could find that was close to me. I had to move him there due to my mental and physical exhaustion after the first 3.5 years.

The book "Being Mortal" also helped me, as did several other resources, but I recommend both you and your dad start with "The 36-Hour Day." My wife and I also participated in local Alzheimer's support groups and found most of them very helpful, but I suspect Covid-19 "social distancing" may have temporarily reduced the effectiveness of those groups.

My mom and dad were married for 67 years when my mom died of pulmonary fibrosis nine years before my dad died of Alzheimer's. (She died worrying that my dad's metatasized prostate cancer was going to kill him.) Their different abilities in their "golden years" together allowed them to partially compensate for each other's age-related disabilities, but it was still a hard period for them. Understandably, my dad's dementia accelerated after my mom's death turned his world upside down and inside out. Best wishes to you and your parents during this unexpected journey.
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If they have old photo album’s suggest they look at them together and remember the events discussing them to relive the good moments they shared. This may be a comfort that only they can relate to. My husband is 89 and I do this with him and he enjoys what little he remembers and I love sharing that time with him. I have done this numerous times even with family pictures with our children and grandchildren. I find it to be a very soothing for him. There is no magic answer to this and differs for each person. There’s is truly a love story after that many years together.
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Alzheimer's dementia is like reading a story in reverse. The beginning and earliest parts of story are clearly remembered. The last couple of pages that were most recently read are not remembered. It might be best for your father to focus on the fact she remembers the past most clearly and that they had a very long history together. So current "stuff" will be a problem that he - and you - will need to manage. The love and relationship will not be forgotten for a very long time.

It might be helpful to have more helpers coming into the situation. Family members, friends, member of faith community, and/or paid help can lighten their load by taking on housekeeping, cooking, transportation to and fro, occasional sitting mom so dad can get out a bit on his own (or vice versa). It might also be time for you to take on helping with billpaying and going to medical appointments with them.

At their advanced ages, please make sure the legal paperwork is completed and available: wills, powers of attorney for medical and financial, advanced directives... If not, please take them to a family lawyer to get these in place. Please have a talk with your father about living arrangements for mom if he should pass first. It might be a good idea to have prepaid funerary services so decisions can be accomplished and not weigh on his or your mind.
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If they've been together this long, it will all work out.

At 91, your father is feeling his own age related problems.

You say you help out and that's great.

Yout may talk to your Dad about hiring a Caregiver to stop by a couple hrs one or twice a week.

your Dad might just is bored with staying home and tge Covid.

you might find Dad some new interest like paint by number or whatever to kerp him busy,, even coloring and listening to music..

Your Dad and mom may need to get out of the house.

maybe mom can go with you to get a manicure or maybe Dad can go fir a massage or maybe you could have them come to the house to do it.

Maybe they could call another couple to play cards with or have a Bingo night?

Maybe they both each just need a little alone time?

Prayers
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Your father needs some socialization outside of the home for himself. He has to interact with some seniors who don't have dementia and who are not sick to have some kind of a life.
You know how people from his generation are about things like support groups and therapy. They don't believe in it. Does he have any friends or relatives he can regularly socialize with and go out without your mother? Is there a senior center in town he can join?
Also, it would be good to hire some caregiving services a few days a week. I always advise people hire private-pay because you can check references and do back round checks yourself. You say your mom is mobile on a walker and has moderate dementia. Can she still be taken out in public? A good caregiver will socialize with both of your parents and it will be good for both of them. They can plan activities that be done with both your mother and father together. Your father will feel good about it because he will be able to enjoy just going for things like a lunch with his wife or a drive, because the caregiver will take the responsibility of your mother's care off of him.
I had a homecare client who had mobility issues and moderate dementia. She also repeated herself over and over. Her husband was in good health. Before the wife got really bad off, I would take them both for lunches and other activities. Her husband enjoyed being out with her because all the care needs (toileting, walking, getting her seated, ordering food she could handle herself, etc...) was taken care of by me and it was a relief to him. He was getting out of the house a bit and so was she. It was good.
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Apart from you, who else can your dad talk to? Not necessarily about this, but about life and things in general?

I can't see any way to ease the heart of someone who's losing the lady he's loved for all his life. But encouraging him to keep in contact with as wide a circle as possible may help by making him feel less completely alone.

You should also do what you can to encourage him to accept practical help and support from a variety of sources. He is, not that I want to be alarmist about it or God forbid make you feel worse, a prime candidate for being the kind of caregiver who dies before the person he is caring for.
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MamaChar Feb 2021
I have a younger brother and SIL who are a wonderful help. We share meal preparations during the week and have Sunday dinners together at our folks house. Still, I live only a few minutes away and end up doing the majority of daily visits and most of the meals.

With the Covid, we work to limit the number of visitors (and only those we trust to be covid free) that can come into the house. There are a couple of good friends that stop by to visit with my dad when they can and now that we have a caregiver there (5 hrs day/Tue-Sat), he is able to go outside to visit without worrying about my mother being alone inside.

There are many blessings to count and hopefully 2021 will find a way to control the virus and allow for more outings for ALL of us!
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if they can afford it or if medicaid can take over, I would follow the above advice and get mom into a memory care facility that is part of a senior community where your father can reside. that way your mom gets the professional help that she needs and the stress on dad and you removed. dad can easily visit her as long and as often as he wants. because someone else will be in charge of mom,s physical care, dad will hopefully no longer feel directly responsible for her decline and can focus more on emotionally supporting her.
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MamaChar Feb 2021
There is no way they will qualify for medicaid, but money is not an issue at this point. However, a MCF is not an option at this point either as my father would not consider a move and is adamant that my mother stay in their home until there is no other option (such as full time homecare).

Personally, I agree with keeping her in her familiar and feel her disease would progress rapidly if she was surrounded with strangers in a strange place. Until the Covid is under control and family is allowed to actually visit with them, we intend to keep her at home with family and friends.

I do appreciate your advice though and totally understand where you're coming from.
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Your mom, sadly will only continue to get worse, and there will come a point where your dad won't be able to give her the care she needs at home. Perhaps now is the time to start looking for the appropriate facility for her, where he can know that she's well taken care of 24/7, and he can get back to just being her husband, and you just her daughter.

Teepa Snow has some wonderful videos on YouTube, about dementia, and all it entails. You can both check those out, as they are very helpful, and very informative. Wishing you the best as you try to figure out the next step for your mom. God bless you.
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Sadly there is no happy ending to this. My situation was reversed. Dad with dementia and mom losing this wonderful man she’d been married to for 60 years.

At first mom had trouble understanding that it wasn’t his fault. I had long talks with her about not arguing, reminding him she just told him such and so , redirecting him but it was so hard for her. She had her own serious health issues and had very little mobility at this point.

I don’t know much about the particulars here, but your mom may have to go into care before long. It can be too much for an elder spouse to keep her safe and cared for as things progress.

This is a good place to find help and advice. Others will chime in I’m sure. More details would help people give you comfort and advice.
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I don’t have firsthand experience with Alzheimer’s disease.

Many on this website do. Please stick around and someone can answer your questions.

Best wishes to you and your family.
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