My sister and I were very close growing up. She is one year older (82). We were often taken for twins and were genuinely best friends. Now I am a caregiver for a stranger with dementia. It is a serious responsibility and frankly, I'm really not up to handling it. I don't know how to make small talk or even smile and laugh most of the time. We used to be able to talk about anything, but now she is sarcastic, argumentative, and always "right." She resents so much. She accepts so little and rarely if ever with thanks. We do have a caregiver who comes for four hours a day. I have many appointments of my own as I am being treated for prostate cancer.
She is in her own home. The goal is for her to remain "at home" until the very end. Although I am family, I am both a guest and a servant in the house. Getting away even for an over night is like a mini-vacation from the stress. A support group would be great, but I'm not looking for a pity party to be held on my behalf. I just want to be a better brother and a supportive one.

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You know, everyone's 'goal' is to stay in their own home until the bitter end. I myself said, when I bought this home in 2003, that they'd have to pry my cold dead bones out of here with a chisel after I died. Which is a rather ignorant thing to say, when you stop to think about it.

It's now 17 years later, I'm remarried, my mother is almost 94, had to sell her house to move here to be closer to me, her only child, and I had to place both of my folks in Assisted Living back in 2014 due to my dad breaking a hip. They had no other choice but to sell their beloved home and move here because dad couldn't drive anymore.

It's likely I'm only a couple of years away from selling MY house, which I vowed to never do, because it's now too big and too expensive to deal with (and to clean). Things change, in spite of all the promises we make.

Life throws us curveballs we sure weren't expecting, especially in the health department. We have to be flexible with our plans, even those we thought were set in stone. They aren't.

You are remembering your sister as she once was, but is no longer. Dementia robs a person of who they once were. Of all the memories we had of them, and turns them into people we no longer recognize.

My mother has always been a difficult person, truthfully, but is now SO incredibly insufferable, with dementia, that I can only tolerate her in small doses. VERY small doses, to be honest. It is what it is. It's not her fault she has dementia and is THE most argumentative human that has ever lived. And it's not my fault that I only have SO much patience for her behavior.

Expecting to take care of your sister in her own home until the bitter end is probably unrealistic. Dementia reaches a point where the afflicted becomes unmanageable. Starts playing with their own feces, or fiddling around with chemicals under the sink, or leaving the gas on the stove on and blowing the house up. Or insisting they live across the street, leaving the house at 3 am to 'go home', falling in the street and dying.

That's why Memory Care ALFs are popping up on every street corner like spring flowers. Because we mere mortals can't handle demented folks after a certain point anymore at home. We sell their homes to finance their care in these ALFs, and that's that.

If you haven't already, read all you can about dementia and the stages of it, and how it progresses, and what you can expect from your sister moving forward. And then, when you're ready to raise the white flag and cry uncle, start looking into Memory Care ALFs and choose one that feels right to YOU. Become her brother again instead of her caregiver and visit her in the ALF, bringing over small gifts and snacks. It's the best of a very bad situation.

And while you don't want pity, in all honesty, I pity ALL of us who have to deal with this dreadful affliction of those we love and lost. It's really sad to see what happens to someone as they go down this road and lose themselves entirely.

Sending you a big hug and a prayer for YOUR peace, because you deserve it. Nobody escapes without lots of scars and bruises here, that's for sure. But I hope you come out the other side whole and happy, knowing you did your very best for your beloved sister.
Helpful Answer (11)

Dear MAJcare,
Please consider a support group. They are not "pity parties". Most support groups are much like this forum, people who have been through situations like yours and have helpful suggestions. It's definitely worth exploring.
I work as a senior companion through an agency and many of my clients have been dementia patients. It is very difficult to have a regular conversation. Try looking through a magazine or catalogue together and talking about the pictures. Spend a lot of time on each picture, dementia slows down processing. For example, if there is a picture of people in a restaurant comment on their outfits, what the occasion might be, decor in the room, the food....anything in the picture. "Oh look, they are all dressed up. I wonder if it's New Year's eve. Maybe they are going to a party after this dinner. It looks like a fancy restaurant, see the chandelier. Maybe its NY and they are going to Times Square to watch the ball drop..."
I have found many people with dementia become calmer doing this. And, it can be creative and fun for you too.
Best of luck to you.
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The last paragraph of your post refers to her wishes to die in her own home. Below is a good summation that I gleaned from this forum. I wrote it down and I refer to it often. Maybe it helps you as well. You sound like a wonderful and amazing person and this isn’t meant to sound crass, it just helped me.

”Dying at home is a selfish desire, and one that's reliant on others to be realized.”
Helpful Answer (7)

You know how the airlines tell you to put on your own oxygen mask first?

You are going yo be of no use to your sister if you are dead or disabled. It is NOT selfishness to take care of YOUR health first and foremost.

Either your sister needs to pay for a LOT more hours of caregiving from someone other than you or you need to find a good placement for her.
Helpful Answer (5)

I can't tell you how my heart goes out to you. In my case I was the sister and my bro the brother. We always described ourselves as twins, though there was 7 years dividing us. We even looked alike. We considered ourselves to be Hansel and Gretel in the dark forests of life, safe as long as we held hands. We often lived in the same city, and in the end our state divided us, he being a sun lover in So Cal and me in the Bay Area.
When he had a serious accident at age 84 he told me he had long known something was happening and told me his symptoms. As a nurse I had suspicions and when he was diagnosed as probable early Lewy's Dementia, I wasn't surprised.
My bro and I quickly acted in this behalf, he putting me in as Trustee of his Trust and POA, having me take over all banking, all bills, and we sold his home. He moved to ALF where he was likely the most well one in his cottage. He didn't like it much, but it was a great place, IS a great place, and he got great care. Soon he was telling me that it was much like when he was in the army as a young man "I don't like it, but I make the best of it". I had a lot to learn. Forum here saved my life more than once.
Over that year and one half I often took flights to be with my bro. We talked about hope and fears and what was coming, and I slowly saw changes as he turned more to a bit of paranoia over "missing things" that later showed up. Once he complained of no control of his money and I told him to review his monthly accounting, know it was hard for me, and I would kill to hand it over to a fiduciary. We got him his own spending account, and that helped. The occ. bicker made me laugh. I told him "We never fought at all; we always hid problems; but we can't hide this, have to deal with it. We would have been fine, life long no arguments if there was no "mess" but now there's a mess and we have to be honest with one another.
Last May at the beginning of Covid my bro got a cellulitis. It went septic, and within weeks he was in hospice, and then gone from me. I will be so honest to tell you I felt relief. That I didn't have to dread and fear for him, or for me losing him while he still lived.
I never could have done in home care, or even a whole lot of support, and I wasn't even dealing with my own serious health issues.
I am glad you are here. I hope you find support as I did. And again, my heart so goes out to you in your loss.
Helpful Answer (5)
sjplegacy Nov 2020
Your experiences both in caring and in nursing lends so much of a personal aspect to your posts. Your sis-bro relationship is such a parellel experience to what MAJcare is going thru. I hope it helps him.
Dementia caregiving is not one of the things we look forward to in our later years. Caring for a LO with dementia is not for the meek. Often it seems that we have no choice, we're just throw into the responsibility of being the default caregiver and saddled with all the emotions that come with it. You say the plan is to keep her home until the very end but that might not be possible. Her behavior now is just the tip of the iceberg. As her symptoms progress she may become a safety risk, leaving the stove on, wandering out of the house, handling utensils w/o regard for safety, etc. Decide now what the plan will be when that time comes.

I am glad to hear you say you're not up to the responsibilty of this “job”. Many caregivers are afraid to admit that and wind up becoming over stressed, depressed, angry, and resentful about a “commitment” they never should have made. No one should feel obligated to care for another. Caring must be voluntary. Caring can manifest itself in many ways. Having someone else (home care worker) do it is one way. You're already doing that. Eventually you may have to consider a care facility. You place a LO in a facility because you care, not because you don't. MAJ the best thing you can do for yourself is to know your limits of caregiving. When that time comes it's time to look for a new “home” for your sis.

Just to clarify, support groups are not pity parties. They are SUPPORT groups. You will see you are not alone in this endeavor. People do share their stories, experiences and suggestions among themselves. Often the stories are humorous and create laughter. The groups are therapeutic. Fortuneately I have begun to resume one of 3 support groups I facilitated pre COVID. You may want to check out some dementia educational books. "The 36 Hour Day" and "Learning to Speak Alzheimer's" are two excellent resources.

I also had prostate cancer in 2001. Surgery took care of it. No recurrence. Keep up the fight.
Helpful Answer (5)

My heart truly goes out to you. You are a great brother, but your physical and mental health are so important. Please consider hiring additional helpers/caregivers. You need more time to recharge and recover from this type of unrelenting stress. As you know, your sister will need more and more care. Remind yourself that her safety and your sanity and health are the issues that truly matter. Thank you for sharing your situation. This is a great forum for understanding, clarity and advice.
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Just learning more about dementia helps deal with the changes in behavior of those we once knew so well. And the changes will continue. Hopefully your sister will calm down, but the main thing everyone will tell you is to not argue with her. It will not help and will only make the mood of the household bad. She can't reason, so there is use trying to make your own point, unless there is a real danger to what she might decide to do. Depending on her ability to remain at home, considering the financial cost, and your own emotional wellbeing, it would be good to at least look into facilities in your area, just in case it gets too hard to handle. Have you tried to talk to her about the past, back when you were best friends, or look at photos together from then? That might be much easier for her to relate to when she has trouble figuring out the present.
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One of the horrors of dementia is the appearance of the stranger, and none of us, when it happens, can avoid it. You have wisely observed that she is not the beloved person of your memories.

Can it help you to “allow” her to be the sour crank that she is, while knowing that she is just as unhappy (probably more) about the changes in her as you are? You know by now that nothing you say will change her thoughts or actions. Is there anything left that you COULD share, if you were to begin thinking of her as she is, and not as she used to be?

I hope you can understand that no one here can feel pity for you, because one situation or another dealing with the needs of a LO is part of our lives too. None of us have access to “the good way” of dealing with dementia, and for some of us, Covid has made our circumstances even more extreme.

Who has made the goal for her to remain “at home”? Placement in residential care can sometimes be a kinder option for all concerned. My mother lived 5 1/2 safe and comfortable years in a fine local setting where I was able to visit every day.

You are taking good care of your physical health. Be sure you stay flexible in terms of planning I to what you!re doing now what YOU NEED to keep yourself as comfortable as possible emotionally. Your needs deserve to be met as much as her.

Keep coming.
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I know many people make the promise to keep someone in their home until the very end, but that promise is made without any inkling of what is going to happen and the care that is going to be required.  The two of you are basically the same age and your focus needs to be on your own health (mental and physical).  Do not feel like you are breaking a promise if you have to ask for help or better yet, place her.

I totally agree with a previous poster who said:
”Dying at home is a selfish desire, and one that's reliant on others to be realized.”

Would you want to put this burden on your sister if it were you with dementia? I doubt you would. Do not feel guilty.  Placing her where she can get 24/7 care is the kindest thing you can do for your sister.

Take care of yourself!
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