My wife is currently in a Dementia Care facility, and I am planning to move her into a home facility, either a condo or apartment and maybe a private dwelling.
Forget life expectancy. Focus on quality of life, and weigh up which environment is likely to match your wife's priorities better. For example: stimulation from others being around her (facility), versus privacy and one-to-one care (individual care in a private apartment).
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.
Yes, this is my thought, too. I'll add that "life expectancy" can mean a shorter but happier life, as opposed to a longer, miserable one. But this depends on various factors, some within our control and others not within our control. The quality of the facility, the quality of home care, and simply what nature hands to the LO receiving the care are all factors that influence the outcome.
In the case of my mother, I believe her life has definitely been extended in her memory care facility. My dad lived his wedding vows cared for Mom in sickness and in health, and he never would have put her in a facility.* However, he was also an elderly person and caring for her was a full-time job, as was the cooking, cleaning, and grocery shopping required to keep them going. He was in excellent health overall, but he was lucky if he could complete one major task each day.
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.
"being locked in the same place with nothing changing day in and day out is like dying a slow death..."
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 have a question: why would you try to be prolonging the life of a senior suffering from dementia? Have you really seen what it's like for a person suffering the ravages of dementia? I have. My mother is 94 and it's heartbreaking to hear her talking about her dead sister and how she needs to 'get to her' and 'care for her children' all the time, and the woman's been dead for 8 years now. She begs to die on a daily basis b/c she's in chronic pain and misery. In fact, I pray to God to TAKE her so she can get OUT of the demented misery she suffers daily.
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.
Thanks for a thoughtful answer from Lealonnie1. I agree that prolonging the life of a person with dementia is not looking at what dementia IS. Our mother is in AL and she loves it but she is trapped in the grey, misty hell of remembering nothing. My many sibs and I are pretty united that heaven for her would be moving on. What's the point of living longer?
Very difficult situation and I can only speak from the position of a daughter who was thrust (overnight) into caring for my father when his wife, my stepmother, died suddenly 3 years ago. He was in a moderate stage of dementia and not all dementias are the same. I had to learn on the fly the differences and also had to consider how I had seen my father live his own life. What would he want? He could not tell me. I determined to be his caregiver but I had my own family and a job. Due to his cognitive decline, he needed 24/7 care though physically, he was still very healthy at 89 years old. After six weeks, I hired two part-time caregivers. I did this through my own process of networking and interviewing, did background checks and called references. We now have four part time caregivers plus me to handle every hour of every day. His quality of life is better than I believe he could get anywhere because I direct his care team based on his changing needs and it is always customized with those in mind. We are fortunate that he has the monthly income to pay for this because we are spending about $85,000 per year for at-home care. Had we chosen a home care agency to provide a care team, it would have been about 40% more. So it is very expensive. I ultimately had to put aside the argument of whether it’s better in his own home with customized care or in a Memory Care facility with all the good they try to do. I prayed a lot. The answer came to me to make the decision based on two criteria: 1. Does my father know (as evidenced by whether he is agitated or at peace) that he is loved? 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.
I agree that it is quality, not quantity. During the pandemic, home is better than facility, hands down. And home is less expensive than facility. $85K is how much I am paying to care for my husband at home now, but the cost would be at least twice as much in a facility with less one-on-one supervision.
I do not know the answer to when people die. Only God knows and he is not telling us until it happens. Whether you keep someone at home if they have dementia, they may be happier but YOUR life could become hell and you could be harmed. In a facility they would be monitored and cared for. The question is this - who is more important now at this point? I say YOU are - you are still here without dementia and have the capacity to live a full, normal life. Why would you want to change that status and be traumatized by someone with dementia. That person has lived life to the fullest before and now has mental and physical problems and can't be left unsupervised. Don't keep them at home - live your life - you get only one chance. Keep tabs on things and oversee them from a distance. God will take them when he wants them - no one knows that date
There are risks and challenges to both. 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.
Good thoughtful response. I cared for my husband with Alzheimer’s for a year. It became no longer safe for him because he was forgetting that he needed assistance to walk and therefore fell a lot. It was no longer safe for me because he didn’t allow outside help. I was therefore burning out. The SNF he is in now is very good to him. The nurses and aides are helpful and friendly. However I am still his caregiver and as such have to keep up with what’s going on. It’s not ideal because he’d rather be home but it’s the best I can do.
In a very different set of circumstances that really separate our stories, I can say with certainty that my mother lived far longer with nursing home care than she would have at home. And I can also say she wouldn’t have preferred to live at all as her life was. No matter where you may be, there are worse fates than dying. If the goal is extending life, be very sure the life is one that would be desirable
People with dementia are in an age demographic where there are just too many other health variables that can shorten their lives. And now of course there is covid in the mix.
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."
I don't really understand the basis for your question. Do you want to make her life with dementia as long as possible, regardless of quality of life?
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.
If it helps, I was told by long-term nurse in a nursing home dementia unit that the average lifespan after entering a facility is 6 years. He was spot-on in our case.
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.
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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