Caregiver Heroism and Unanswered Questions

@pcetng0202 I especially like the way you started the discussion, “that you wanted to write something that would at once pay tribute to the heroes and heroines that have brought me so much insight into how to deal with my wife’s progressive dementia….” Well said, @pcetng0202 .
Do you think it would help at all to have someone stay in your house at night? You could get some sorely needed rest while the CNA helps your wife. Just a thought.

Dear @pcetng0202
I can imagine your understandable fear. All the advice and good wishes do not diminish our rational awareness of the care load and the fear of its likely surge upward over time. One can feel very very alone at night when the work may be done for the day but there are administrative matters to deal with and the sense that getting enough sleep is unlikely before it all starts again.

My thoughts
I have never seen benefits from drawing a person's attention to their dementia. There are bountiful benefits from keeping out dear ones feeling as whole as possible. The benefits for the person are clear, they can avoid fear and depression that so often visits those with not just dementia but a named "sentence" of dementia. The family avoids the secondary effects of that person's fear and depression, behavioral issues, sleep issues, etc. The family also benefits because it is a joyful act to keep someone who is fading feeling connection, joy, worth, love, calm, etc. It is also a " culture" that is more comfortable for others to enter and participate in: You don't want to lose friends and helpers who are made uneasy by a grim, deficit- focused aura.

I hope that your wife can be appropriately compliant while remaining innocent of her true condition. But telling someone that they have dementia to convince them to do something is kind of like telling a child "because I said so", it points out their position but may not lead to compliance. My approach was to make the needed changes in our lives so enjoyable to my husband that he did not mind being carried along on a string of curated "moments" as his "memory"-driven life no longer was possible.

You do not mention if there are family members or other sources of informal care assistance available or if you are in a position financially to be able to afford outside help. My local support group had a mantra for which I will be eternally grateful . Rarely did a meeting happen in which someone wasn't told "Get help before you need it." I think you need it. I was hesitant:
-- What would they do?
-- How can I get him to accept it?
Get someone recommended by an acquaintance who has dementia experience. Or start by finding a day care facility. I started with a home caregiver who was terrific and won my husband over with his personality, dedication to my husband's welfare, and relentlessly jovial attitude. Who among us woudl not like to have someone whose job it is to make us happy and healthy! The day care program was terrific too. 10-2 each day,

The threat to your health of trying to do it all is high and large. I almost died last year of a hemorrhage in my skull. That focused the mind. I realized that I had been piecing together help and it was not a sustainable plan. I hired two young women who split the week, 24x7.

I don't know if your wife is cognitively challenged, but otherwise pretty healthy. I found that the 15+ years of working to enable him, and us, to live fully while his cognitive capabilities changed, was not anywhere near as hard as the time managing cognitive and physical declines associated with the Alzheimer's. We have just started hospice care at home. It is hard to face that our time may be nearing an end but I am so glad that I sought out the gerontologist assessment of that . I had been trying to keep all our options open. Now I can optimize things within the right scenario. And I am being able to do that because I have this fabulous access to deeply knowledgeable and caring people at the hospice service provider.

All the best to you!

The wisdom and compassion of your response was priceless.
I will respond more fully about our situation when time permits. The day here(London, Ontario) is gloomy but your rapid response has brightened it.

Tom G.

@memoriestomoments -as before, your words bring much wisdom and caring! I learn so much from you and others who share their thoughts and experiences on this wonderful site…we are almost there - to needing help, but hard to know. Right now, my husband would not accept, nor probably need assistance in the home, and not ready for day facilities either…but changes are seeming to happen more quickly of late. We did visit and tour a wonderful day care place near us. I hope we can get in when ready. I am sorry to read your time may be nearing an end, and glad you were able to take advantage of wonderful people to help you and your loved one. “Get help before you need it” is something my psychiatrist says also, but currently, my husband is not there yet. Best wishes to you and thank you for contributing while you have so much going on in your own life!

I think living daily with ambiguity is one of the hardest things to face as we slowly watch the love of our life deteriorate: here one day and gone the next. How can anyone seek balance in all that? Especially when we're so eager to control our life situations. "God give us grace to accept with serenity the things that cannot be changed, courage to change the things that cannot be changed, the wisdom to distinguish the one from the other." How do we embrace ambiguity? With courage and with clarity. In knowing when it's time to accept the loss and get in home-help. I saw my neighbor, 90 years old in "functional denial" of his wife's dementia. He wanted to hold on tight to what he had, he sought control, managed his wife's dementia like a spreadsheet, to his own detriment. He told me that for better or for worse, he had to care for her. He wouldn't engage help, he desperately needed for both of them, to make him a better caregiver. She needed help at night too. He so desperately sleep-deprived and had difficulty in helping her. He couldn't accept the ambiguity, he couldn't adapt, and he lived in fear. His exhaustion was real and noticeable: weight loss, neither were eating, she wouldn't bathe, she wouldn't let him bathe her, he would get so angry. As their neighbor, it was really sad to watch. Finally, when it became apparent to others, his out of state family desperately calling me as the neighbor, with no other neighbors wanting to engage, we finally got him to accept the change and get in home help. You mention: your quest for balance is "necessity slipping, your exhaustion on many days frightening." I think you've answered your own question. Seek help. In reading these posts, the memories we once had with our loved ones, get replaced with lucid moments mixed in with this gray area, ambiguous loss. I think we have to embrace a new way of thinking, and include others in this part of our journey, so we create new memories for whatever time we have left with our loved ones. It's the "Take Control Quietly" that @memoriestomoments talked about in her recent post. And in doing so, I'd like to that that fear gets replaced with acceptance and a sigh of relief that we are not alone and have the needed help that we may not have been ready for. Sometimes, we don't know what we don't know or do we? If you haven't already done so, read; Read "Loving Someone with Dementia" by Pauline Boss. Best, Karla

Hi Tom:
Good for you for reaching out for support and guidance (the first step is admitting you have a problem).
You asked what your wife's expected trajectory might be, and that one is too tough to answer.
This is my 2nd year on this blog forum, and I learn so much from others.
One thing I've learned is that everyone's experience is so different, so your question is hard to answer.
So many factors to consider when even attempting to answer your question:
What is her official diagnosis, what type of dementia? There are many, many types and that will affect the outcome.
Is this familial dementia, did she inherit this from a family member?
What was her age at onset?
Does she have any underlying health issues on top of the dementia?
Knowing some of this info may guide you to the correct specialist to better address her needs.
I took Karla's suggestion and am reading Loving Someone with Dementia.
I take many free online classes for caregivers, I attend 3 support groups and am on a long waiting list to see a therapist.
Hugs and virtual support to you. 🌻

Good morning Tom -
Thank you for your tribute to us caregivers. I venture to guess that most of us on this forum get very few thank yous or recognitions for the many daily sacrifices and hard work that goes into the daily life of caring for a loved one with dementia, so it was a lovely gift to receive.

Regarding your questions, I do not have “answers” but am willing to share my thoughts for what they are worth.

“Would it serve any purpose to try to disabuse her of her illusions?“ in my experience, no, it would not assist you or her and in many ways only make things more challenging. Better to appear to understand her perspective on things no matter how off base, and use the time to “connect rather than correct” as Teepa Snow would say. The only things that make sense to redirect are activities that pose a safety concern, and offering an alternative activity can sometimes work well.

“BUT how long will this last?” For me, that is the big question and I am still trying to learn the answer. I feel like it’s akin to being in a pitch black room and trying to feel me way around and discover the path. Just knowing the answer to this question would be so much help. It is a balancing act and I don’t know how to know when the scales have tipped enough that it is time to move to the next step, whether that be care facilities, getting help in the home, etc. I have also heard get help before you need it, and I understand why. It’s not good to get to a “breakdown” before getting the help, but I still don’t know when that is! I am hearing from friends and family that they think it’s time to begin looking at other care options, so maybe that is God sending me advocates to help me along? So hard to know. I pray about this every day and hope that I will know when is the right time. I am also wondering what I will do and who I will be when I am not doing this anymore. I think that adds to my hesitation and uncertainty.

I hope that you find all the answers you seek and appreciate any wisdom that you can share!

Greetings Tom,
My husband of 52 years had a TBI in 2021, resulting in epilepsy and dementia. MC testing recently showed a component of Alzheimer’s disease. His sundowning is difficult to say the least and he is now on a low dose sedative. I’m his sole care provider, and I’m grateful and thankful for my strength and ability to care for him. I see his smiles resulting from the happiness he feels sharing this disease with me with no fear just comfort. The more of me I give to him brings me enough joy for us both. One day at a time…and pat yourself on the back at the end of each day for a job WELL done for your loved one. We’re all heroes and here for you. God bless you both.

I can relate. My husband is still sweet during the day but has severe Sundowners and gets confused, argumentative and accusatory in the evening. Everyone says I need to put him in Memory Care but I know he will either be terribly hurt or angry, so I keep putting it off. Blessings to you and your loved one.

I cannot tell you how much your message meant to me. To know what you have gone and are going through since your husband's TBI and yet to witness your taking the time to send a note of good cheer to a stranger shows your strength of character. Yes, wise caregivers cling to helping their loved one even as they feel good reaching out to other "unfortunates." Indeed, I put that word in quotes, because most days I consider it a privilege to do all I can for my wife, a truly remarkable woman who deserved a better denouement,

In any case, I hope we can continue to communicate.

Best,

Tom G.