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There isn't going to be a "right" (or a wrong) answer, by the way. You can only do your best with the available options. I wish you the very best in making a choice that suits your wife and gives you peace of mind.
He died first (not what we ever thought would happen), and my mother, who had been sleeping in a chair all day and in bed all night, was wasting away. I moved her to a memory care place after a seven-month stint in skilled nursing where she continued to sleep all day and deteriorate. Within days of her moving to the MC, she was no longer sleeping during the day at all, except for a little short snooze here and there.
Her MIND was finally being stimulated, and that's what I had decided was the most important thing to treat among my mother's myriad health issues. The other issues were never going to get better and have certainly been treated as needed, but her mind needed treatment, and it wasn't getting it if she was left alone for the majority of the day while my dad was trying to keep the house going, or the nurse at the skilled nursing place were dealing with other patients. At the MC, she was with other people all day, every day, and if she participated in activities, great, but if she didn't want to, they still made sure she was around the people who were participating.
Don't ever underestimate the value of mental stimulation by living, breathing people and variety in one's day. As we've all learned from the pandemic, being locked in the same place with nothing changing day in and day out is like dying a slow death, and it's up to us to find different things to do each day. In my mom's case, the memory care facility filled that need in a way that no one-on-one living situation could ever do.
*My father died first -- 100% healthy, no issues, diagnosed with cancer, and dead in six weeks. I absolutely blame the stress of my mother's care for his early demise. He wouldn't have done it any other way, but he also knew that when he died I would have to place her because she wouldn't have been able to stay in their house much longer as she deteriorated physically. He was completely fine with that and had nothing against nursing homes -- it was just his personal oath not to place her, but he also would have had to eventually if he was still with us.
That's exactly what happened to my Mama, during nine months of long term care. The combination of sensory deprivation and isolation is a terrible thing. The woman who died was not the same woman I brought to "Shady Pines," and I don't think I'll ever get over the trauma of watching the intelligent, witty and loving mother I knew disintegrate before my eyes. Memory care might have brought her back, but the only MC facility nearby had serious violations, and I didn't want to put her there.
I wouldn't wish a long life for a person with dementia on my worst enemy. I believe my mother is receiving a greater quality of care at the Memory Care ALF she's living at than she would with me. I will not read the responses here b/c I'm sure there will be the standard 'oh take her home where she will be LOVED' and yada yada. The real truth of the matter is this: Good care can be found in Memory Care ALFs and at home, if the family member has a village to help him with that care. If not, place her. Love comes in many forms and from many places, in Memory Care and out. My mother's caregivers love her daily, and so do her family members who call and visit, etc.
There is no 'one size fits all' answer to what's 'right' for YOUR loved one. I just wanted to address the 'extend the life expectancy' aspect of your post.
Wishing you the best of luck with quality not quantity of your loved one's remaining time in the physical world.
2. Is it safe for him to be in his own home? If he cannot move with assistance to or from a chair or another room without falling, it is unsafe.
For me, quality of care is what I’ve chosen and because he can afford 24/7 care in his own home, I’ve done my best to manage that for him. But I am also aware that it would be cruel to keep him at home if he wasn’t able to get customized care that is managed by someone able to oversee it.
My opinion: It is not about quantity of life as if we can live forever. We cannot. A quote I once heard goes something like this: (may not be an exact quote)
it’s not the years in your life that matter, it’s the life in your years.
May God give you guidance as you do your best to provide whatever is best for your loved one.
It is difficult to say what the life expectancy is or would be. Each person is different. And you can not go back and do it again to compare the two.
The only thing you can do is make the right decision given the information you currently have. You can not second guess yourself.
If she is in a facility now and is doing well it might be best to leave her where she is comfortable. And if you just moved her in it will take a while for her to adjust and you just need to give it a bit of time. If you move her she will have to go through the same period of adjustment no matter where you place her.
Would a solution have been to keep her at home with help coming in 24/7?
When I cared for my Husband I had caregivers come in and I managed very well. I had the help from Hospice and some help from the VA. I could not have done it without them BUT my Husband was also VERY easy to care for. He was always compliant, he was never violent. There were a few times he wandered but that was cut short when he slipped on some ice and broke his hip. So a lot of the typical problems were ones I did not have to worry about. Another advantage is the house that I am in was built Handicap accessible so it was EASY to care for him. Not everyone is as lucky as I was.
Bottom line is this. It comes down to safety.
I always said I would keep my Husband at home as long as it was safe.
Safe for HIM for me to care for him at home.
Safe for ME to care for him at home.
That was the base criteria I went by.
If you move her into a private dwelling, will you be her daily, hands-on caregiver? Or are you thinking of seeking, vetting, hiring and managing a team of people? FY this would make you an employer and you will need to comply with your state's employment tax laws.
If you are considering being her main caregiver, I have read on this forum many people cite that care GIVERS have a higher risk of passing before their care receivers due to the increase in stress (physical, mental, emotional and financial).
"...spousal caregivers ages 69 to 96 have a 63 percent higher mortality rate than non-caregivers in the same age group, according to the Family Caregiver Alliance."
(source: https://www.wiparkinson.org/backup-plans-when-a-family-caregiver-dies-before-their-patient/#:~:text=In%20the%20natural%20order%20of,supposed%20to%20die%20before%20patients.&text=In%20fact%2C%20spousal%20caregivers%20ages,to%20the%20Family%20Caregiver%20Alliance.)
63% higher. Please make this move with your eyes wide open. I wish you peace in your heart no matter what you choose for your LO.
Why do you want to bring her home? Of course an nursing home is not always ideal but with dementia, it is often really the only safe and feasible choice to deal with this horrible disease.
I'll also say that home care and nursing care are both only as good as the caregivers AND your level of involvement as a concerned family member. Either way, to get the best outcome, you will need to tirelessly oversee her care and advocate for better when needed. That's how you get the best outcome.
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