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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.
I don't think there would be a way to do any studies on this. People are all different. Some love the extra people around, the activities. Some would prefer fewer people and more a family-feel such as a board and care home. I think right now with Covid-19 around that it would clearly be preferable to be in a situation with fewer people coming and going until vaccinations are done. You know your senior better than anyone. So your guess is likely the BEST guess, while still being ONLY a guess. Good luck. Let us know how things go.
Are you going to get her private care or are you going to do the care. If in a facility, she has probably progressed where she needs 24/7 care. Even if you r going to be her primary caregiver, you will need help. Its going to be hard with COVID. Those suffering from Dementia do not do well with change. They like familiar surroundings. Does she know you as her husband. If not, may not like a strange man caring for her. I think this is something you need to discuss with those who see and care for her everyday.
Be aware that change may cause decline and even anxiety.
My mother hated, HATED DOCTORS, of ALL KINDS. When I was born she chose some old relic who’d been in town for years, retired, then came out of retirement to cover for younger doctors who were going off to war.
She chose him because he didn’t do any “embarrassing” examination actions, and he DIDN’T.
After a harrowing delivery of me, she stopped going to ANY DOCTORS, (Vicks, Gellusil, Bayer Aspirin, Ungentine, BenGay) until at 85, she had a severe left hemisphere stroke. Hospitalized for 2 days, she to,d the doctor on Saturday morning that “they weren’t feeding her” and he let her go home, to live by herself until 5 years later when she fell, pulverizing her right hip joint.
Following this event came dementia, and in spite of both she and I determining when she was younger that we’d NEVER ATTEMPT TO LIVE UNDER THE SAME ROOF, I brought her home to me to 9 months of misery for us both.
Nothing was left to try but a beautiful local residential center, so that’s what we tried.
Much to my shock, she lived her last 5 1/2years in happiness, safety, peace, and comfort there. The LOVED HER, and she LOVED THEM. She stole their heavily spiced lunches, flirted with the men, laughed at everyone’s jokes, and consoled “her girls” through their heartbreaks.
I was there EVERY DAY, TWICE EVERY SUNDAY, and I grew to love them too, every one of them. Eventually one of her favorites bought the house where she’d lived from childhood.
She died at a wonderful fulfilled 95. Needless to say, her circumstances were VERY well run and I paid very near a million dollars for that 5 1/2 years. Worth every cent.
HER MOTHER LIVED AT HOME FOR 10 YEARS, with aides and lots of family input.
In a comparison of OUR family’s choices, residential care was vastly superior, no comparison actually. Hard call for you. Be sure to look for balance for her situation AND anyone else who is involved in her care.
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."
Roger, you've got an outstanding resume' and I want to especially thank you for your 30 years of military service. My 3 yrs as a Navy Seabee doesn't compare. As already mentioned, there have been no studies that I'm aware of relating to life expectancy in a care facility vs. at home. Why are you thinking of moving her? Are you dissatisfied with the care she's getting in the facility? Do you think you can give her better care? Is it a matter of loneliness (we all suffer from that)? All of these may be valid reasons to move her, but I think it would be better if, instead of comparing life expectancy, you compared the care she's getting in the facility with what you think she would get in a home. I assume you would live with her. Even with hiring outside care, e.g., a home care agency, I think you would be stressed to the max. Caring for someone with dementia is a high stress, high anxiety, undertaking that could lead to health issues for yourself and complicate her's. Many of us have been caregivers for our LO at home and eventually had to place him/her in a care facility, even with home care. If you would relocate her, I think the time would come when you would decide to re-place her in a care facility for both her and your benefit. Many with dementia have erratic and unpredictable behavior that is most difficult to manage in the home ( wandering, anger episodes, incontinence and irregular sleep, come to mind). This is not a job for a 90+ year old. If it were me I would keep her in the facility unless you believe she is not getting proper care. In that case, I still wouldn't bring her home, I would find another facility. I wish you luck.
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 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.
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
From my own experience, I would say that my mother would have died a long time ago if she had been in care. It's not that the quality of care is bad, but the level of care that I have to give her to stop her from getting bladder infections would not be manageable in a care home. I have to place her on the toilet at a certain time every day to try to get her to have a bowel movement in the toilet and not in her pad. Also, I have to clean her afterwards as she does a terrible job of wiping and gets it in places she shouldn't. I don't always succeed, but the number of accidents is low using this schedule. She had given herself sepsis two years ago before we realised how badly the dementia had affected her abilities so now we are super vigilant about cleanliness.
She's cared for in BOTH Memory Care AND at home, but usually MORE care is provided in Memory Care, let's face it. Love comes to her in either place, from family AND from caregivers.
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've cared for my 68 year old husband for over 6 years when the dementia first set in, and once it was diagnosed as Alzheimers 3 years later. With no assistance since families aren't nearby, the stress had taken it's toll on me physically, emotionally, and mentally for the 24/7 care. In home caregivers failed us, being no-shows, irresponsible, and inexperienced, and untrusting, thus, not meeting my requirements. My husband is physically healthy, but on bp meds and cholesterol meds, plus some vitamins, but the Alzheimers eventually agitated his moods where I couldn't handle his anger episodes. So, I was worried that he would hurt a caregiver in our home, too. No choice but to place him in a memory care facility. Yes, very costly and draining our retirement money which will eventually run out. Unfortunately, his anger episodes were shown a couple times at the facility, and he actually hurt a lady, and the facility gave me no choice but to place him in another place. Their reason was to protect the other women. He's doing better now that there are men in his unit, who he can chat with, but that won't guarantee him not getting angry again. The nurses haven't used the emergency meds yet, but may have to if he gets worse. If the anger continues, he will need to be placed in a treatment facility for several weeks, but the facility will still charge me the daily fee while he's gone to hold his bed until he returns. Anyway, 75% of men with Alzheimers have anger issues, so if it gets to the point where your loved one experiences those issues, I'd advise a memory care facility so that he/she doesn't hurt anyone in your home and cause a law suit against you. After the last 6 months since my husband has been placed in a facility, I decided he was better off there since he could mingle with people and do some activities, whereas if he was home alone with me and being confined with Covid, he would be bored, agitated even more being cooped up in just our home and no visitors. He misses some friends and family, but his memory has progressed some in the last 6 months. What a horrible disease this is, for the loved one and for the caregiver. Do your best to take care of yourself, because all this stress isn't worth risking your health, or even your life. Good luck with your decision. Whatever it is, don't feel guilty, because things are not going to get better either way, and they won't know the difference. God Bless.
Many factors play a role in the life span of those with dementia. Age, physical health, type of dementia, etc...It really varies from person to person. My mom was diagnosed 10 years ago and is perfectly healthy otherwise. She will probably out live me!
Why are you wanting to move your wife home from a facility that has the ability to provide 24/7 care? Have you been told she is near the end of her life and maybe you're wanting her to die at home? What is driving this decision?
It is going to be very expensive to have 24/7 in home care. The stress of taking this on will take a toll on you. Please think carefully before making this leap.
My 96 yr old dad did not want to go live at a Senior Facility. He wanted to stay in his own home.
I hired 24 7 Caregivers for him and I had my son install Nest Cameras so I can watch what is going on since my dad isn't able to remember.
I would say my Dad is happier in his own home.
He doesn't eat a lot at meals and it takes him a long time to eat as he needs constant sayings of what the food is and tell him to take a bite , put it in your mouth and swallow as he's always asking what do I do next.
I know in a Senior Home that is understaffed, he would not be eating, they would just say he doesn't eat and want to put him on a feeding tube.
he doesn't like being by himself and being in his own home, he gets to eat, sleep as he wants, not made to do things on a schedule or made to get out of bed and sit in his wheelchair all day. He's not on any medication except an antibiotic when he occasionally gets a UTI due to wearing a Cathiter 24 7.
It's been 1 1/2 yrs that he's been in his own home with 24 7 Caregivers.
I do not believe he would have lasted 3 months in a home and he would have very unhappy and wouldn't get the one on one care.
Having someone to help you with the care of a LO 24/7 takes a lot of money - much more than a good facility. Plus you need the right kind of house. We are not ALL in that lucky position.
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.
Depending on the type of dementia, there are different life expectancies. Unless a person is being abused: inadequate nutrition, inadequate hydration, inadequate health care... living options tend to not really impact longevity.
The questions you should probably ask yourself is: Which placement options can I afford for a long time? My Gram had dementia along with other health care challenges. She lived to almost 99. Which placement provides the best quality of life? This is where research and visiting facilities can help you.
From your brief statement, I assume you'll do find in finding the right placement for your loved one.
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.
I'll echo some of the sentiments that have been posted here. There might not be 1 right or wrong answer. It depends upon individual circumstances. My mom was in Assisted Living/Memory Care for all of a week, due to Alzheimer's, but she was miserable there, so we took her home, and she lived with us for 5 years. Her stress level came all the way down, which was to everyone's benefit, but that's not always the case. She could still walk (a lot, she'd wander in the neighborhood, so I got my exercise walking with her.) Hypothetically, if life expectancy was longer is a facility, but if she was happier and thrived at home, then that was the right choice for us. She had mental stimulation because I'd talk to her about current events, (some of which she understood and some of which she didn't). We'd also see (my) friends in the neighborhood. I have friends whose parents were in Assisted Living, and they did relatively well. I even wrote a book detailing our adventures taking care of her called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." It's a personal choice in terms of home care vs. Memory Care, in terms of services provided, personal preferences, etc. Best of luck.
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
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?
We went with home care as we liked the one on one care for her best. She could still walk and get out of bed on her own so that was very dangerous for her to not have one on one assistance 24hrs in a home. Unless you can find a place that gives her one on one care 24hrs but it is not common because they have many patients to care for. In a home they can not safely restrain them and patience will fall if they are still mobile as my gramma was. As crazy as it sounds the law says they have the right to fall. My gramma lived to be 98 yrs old but dementia didn’t take her life. She lived very comfortable. Every patient is different and there may be a time she may need to be in a home if her scope of care goes beyond what you and her caregiver can do for her at home. If she’s not seeing a geriatric dr and a geriatric psychologist she needs to be. These dr’s are specialists in this disease and are more flexible w/meds and dosages which is critical to making her comfortable at home. It’s also important for you to get some respite so having 24hr care for her is imperative. Caring for someone at home is very demanding and exhausting and if you don’t have the help it won’t work. As long as your wife has the right meds, a good 24hr caregiver(s) that has patience, enjoys being a companion to your wife and really enjoys her job your wife will do well at home.
rogernoel: A person with dementia will not be able to know the difference between a facility and a home as their brain is broken and will not get better. Unfortunately, the answer that you're looking for is that the disease is going to run its course, change of living arragements or not.
Llamalover, My mother with dementia knew where she was — not at home — yet she wasn’t particularly upset by that. Some days she was more aware than others, and her focus was never on complaining or exerting pressure on loved ones.
My husband’s dementia is not as severe as my mother’s was. He was in hospital during Dec. After almost 4 weeks there, he was admitted to rehab in — and then full-time in — NH. He still is sometimes very agitated about wanting to come home, paranoid about my intentions and everyone’s, and belligerent that he will leave there and get a taxi to bring him home.
It is maddening that the disease has created in him the lack of awareness about his actions (destructive) at home during June-Nov. So, he has no comprehension that the level of care he requires now is greater than what we can provide for him at home. Even when he seems less confused, in perspective, he still doesn’t comprehend.
I doubt anyone can really pin point an answer on life expectancy because dementia seems to advance at so many various speeds. My answer is my own personal opinion - I would say that in home care would be the best way to go. The patient is the only patient in the house and she is your loved one. She is one of many in a facility and staff are tending to all the others throughout the day.
At home, she won't have to sit in a wet/dirty diaper (when/if that becomes an issue) for 30 minutes or maybe the next 3-4 hours. You will know exactly how much she is eating/drinking first hand - what is written into a facility record may or may not be accurate. You will know if she falls down at home. You might not know for sure unless you find bruises and ask at the facility. You will probably recognize something is not right - UTI, congestion, pain, etc - long before facility employees who are trying to get to the next patient.
If you have the means to pay for her care in the home - I say take her home. Let the caregivers do the bulk of the work and you be the daily visitor or company in the room with her. I would say personal care like this increases lifespan because certain illness and falls are better avoided. Not to mention, if there are intermittent periods of lucidity, she is around someone she may recognize. Even if that doesn't happen, you can see first hand that she is well taken care of.
Should she become violent, other considerations may come in to play, however certain medicines (that she would also get in a facility) can be dispensed at home.
Unfortunately none of us has a crystal ball to tell us what's in store for us. Even though the medical "experts" have some estimates for various medical conditions and life expectancy, it varies a lot based on multiple factors, such as age, age of onset, other medical conditions, even our own genetics. These numbers are also averages, so some might live longer, others not as long. Everyone is different. Various types of dementias have different outlooks as well. So, even if you had 2 very similar people with more or less the same medical conditions and the same type of dementia, you wouldn't have any way to know who would pass first or from what.
As others indicated, what's more important is quality of life, not length. The final stages in many ways are not really "living." So, trying to make a decision about whether to bring her "home" or not should not be based on trying to guess how long she might live, but rather what would be best for her and you.
Some concerns:
Moving is very hard on those with dementia. It can bring on confusion, anger, a host of undesirable behaviors. It can also result in additional setbacks. Many times the "home" they refer to isn't the one you think it is!!
You didn't indicate how long your wife has been in the facility or how long ago she was Dxed (or showing signs.) The second of those two is more important - first signs. There's still no way to tell, but there is a huge difference in the current estimates of life expectancy when different dementias are at play. Sometimes it is mixed dementia, so more than one type afflicting them, which impacts the averages as well.
From one web site I checked, mom had about a 4 year window, from the date of Dx, for vascular dementia. Since we never really had tests, etc, I can only go with her being early 90 showing signs, and 92 when we moved her to MC. She lost the battle to a second stroke (one around Labor Day, the second one mid-Dec), not dementia. She was over 97 at that time, so she outlived the "average", and spent 4 years in the facility. She was well cared for, always clean and alert when I visited, any tumbles or questions about anything, they contacted me right away, etc. The QUALITY of the facility had a good impact on the QUALITY of her remaining time. She was still pretty feisty after the first stroke, just hindered by some loss of control. Just before the move, living alone, she injured her shin. It was infected and could have killed her then.
If she has only been there a short time, try to give it a little more time. She needs time to adjust and you do as well. If you have explicit concerns, work with the staff on addressing your concerns. Quite possibly your reticence could be the current restrictions because of the virus, and not being allowed in to visit. That also might just need a little more time to wait out the vaccinations. Since those in facilities are among the first to get them, and your age would qualify you to be vaccinated, perhaps when everyone is done they can allow you back in?
If she has been there a long time, perhaps you just miss being with her, being locked out? Again, give that a little more time - I should think soon enough after all residents and staff have been vaccinated AND the more elderly family, like yourself, would have also had the shots, so it should be safer to allow visits again.
Another option to consider is moving in with her. IF it's a MC unit, rather than a NH, and she's capable enough to have you sharing the room, you could be together AND have care. Or move into AL is there is one associated with the facility. It might be less expensive than buying and retrofitting a place, and then you would have care for you as well, and be able to visit more often.
You indicated your wife is 92 (at the time you created the profile.) Your age would be similar, we can guess. Caring for a declining person with dementia is a demanding job. Even if you hire care-givers, what would you do if one can't make it for their shift? Would you be prepared, both physically AND knowledge wise to take over for that entire shift? Agency hires usually will send an alternate, but they could be late, no backup available, unfamiliar with your wife's needs and routines, etc. Just trying to run the household is bad enough, but to have to juggle people and schedules too?
Domicile:
You mention condo, apartment or private dwelling. You would have to ensure whatever you choose is handicap accessible. If your wife is still mobile, you'd need bathroom alterations, ramps for outside steps, block off or avoid any interior stairs. Some of these can't be done in an apartment. If she isn't mobile, but has to be moved with a wheelchair, you'd have to ensure the doors and halls were wide enough, have a lift to assist moving her, a ramp for outside stairs, etc. Would there be backup systems in place, such as generators, in the event of power loss? Loss of heat or A/C could be deadly for the elderly infirm.
Equipment:
Would she need a hospital bed? A wheelchair? A transport chair? A Hoyer lift? Some or all of these could be provided by hospice, if she qualifies for that. Otherwise, you'd have to get these in house before she moves.
Location:
How far from the nearest medical facility would the residence be? If there was an emergency, keep in mind the care-givers one hires for in the home are generally CNAs - nursing ASSISTANTS, not nurses. Generally they assist in caring for the person, but cannot do what a nurse can do. They are not even allowed to dispense medications. In a facility, they would have to have a nurse in charge, and sometimes there are doctors on the staff as well.
Purpose:
Is she near end of life? Do you want her near so you can be with her for that time? If she isn't near end of life, are there concerns about the facility and/or care provided? Would the place you buy suit you after she passes? Do you already have a place she could move into? If so, why the need to buy/rent something else?
The move:
How would she be moved? If she is mobile, you could probably get her home okay with a car. If she isn't mobile, can you transition her from wheelchair to car seat and back again, safely? Can you get her out of/into bed?
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Be aware that change may cause decline and even anxiety.
Mostly, I think you need to do what's right for YOUR LO, and ignore the naysayers.
She chose him because he didn’t do any “embarrassing” examination actions, and he DIDN’T.
After a harrowing delivery of me, she stopped going to ANY DOCTORS, (Vicks, Gellusil, Bayer Aspirin, Ungentine, BenGay) until at 85, she had a severe left hemisphere stroke. Hospitalized for 2 days, she to,d the doctor on Saturday morning that “they weren’t feeding her” and he let her go home, to live by herself until 5 years later when she fell, pulverizing her right hip joint.
Following this event came dementia, and in spite of both she and I determining when she was younger that we’d NEVER ATTEMPT TO LIVE UNDER THE SAME ROOF, I brought her home to me to 9 months of misery for us both.
Nothing was left to try but a beautiful local residential center, so that’s what we tried.
Much to my shock, she lived her last 5 1/2years in happiness, safety, peace, and comfort there. The LOVED HER, and she LOVED THEM. She stole their heavily spiced lunches, flirted with the men, laughed at everyone’s jokes, and consoled “her girls” through their heartbreaks.
I was there EVERY DAY, TWICE EVERY SUNDAY, and I grew to love them too, every one of them. Eventually one of her favorites bought the house where she’d lived from childhood.
She died at a wonderful fulfilled 95. Needless to say, her circumstances were VERY well run and I paid very near a million dollars for that 5 1/2 years. Worth every cent.
HER MOTHER LIVED AT HOME FOR 10 YEARS, with aides and lots of family input.
In a comparison of OUR family’s choices, residential care was vastly superior, no comparison actually. Hard call for you. Be sure to look for balance for her situation AND anyone else who is involved in her care.
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.
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.
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.
hugs 🤗
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.
Anyway, 75% of men with Alzheimers have anger issues, so if it gets to the point where your loved one experiences those issues, I'd advise a memory care facility so that he/she doesn't hurt anyone in your home and cause a law suit against you. After the last 6 months since my husband has been placed in a facility, I decided he was better off there since he could mingle with people and do some activities, whereas if he was home alone with me and being confined with Covid, he would be bored, agitated even more being cooped up in just our home and no visitors. He misses some friends and family, but his memory has progressed some in the last 6 months. What a horrible disease this is, for the loved one and for the caregiver. Do your best to take care of yourself, because all this stress isn't worth risking your health, or even your life. Good luck with your decision. Whatever it is, don't feel guilty, because things are not going to get better either way, and they won't know the difference. God Bless.
Why are you wanting to move your wife home from a facility that has the ability to provide 24/7 care? Have you been told she is near the end of her life and maybe you're wanting her to die at home? What is driving this decision?
It is going to be very expensive to have 24/7 in home care. The stress of taking this on will take a toll on you. Please think carefully before making this leap.
I hired 24 7 Caregivers for him and I had my son install Nest Cameras so I can watch what is going on since my dad isn't able to remember.
I would say my Dad is happier in his own home.
He doesn't eat a lot at meals and it takes him a long time to eat as he needs constant sayings of what the food is and tell him to take a bite , put it in your mouth and swallow as he's always asking what do I do next.
I know in a Senior Home that is understaffed, he would not be eating, they would just say he doesn't eat and want to put him on a feeding tube.
he doesn't like being by himself and being in his own home, he gets to eat, sleep as he wants, not made to do things on a schedule or made to get out of bed and sit in his wheelchair all day.
He's not on any medication except an antibiotic when he occasionally gets a UTI due to wearing a Cathiter 24 7.
It's been 1 1/2 yrs that he's been in his own home with 24 7 Caregivers.
I do not believe he would have lasted 3 months in a home and he would have very unhappy and wouldn't get the one on one care.
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.
The questions you should probably ask yourself is:
Which placement options can I afford for a long time?
My Gram had dementia along with other health care challenges.
She lived to almost 99.
Which placement provides the best quality of life?
This is where research and visiting facilities can help you.
From your brief statement, I assume you'll do find in finding the right placement for your loved one.
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.
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.
My mother with dementia knew where she was — not at home — yet she wasn’t particularly upset by that. Some days she was more aware than others, and her focus was never on complaining or exerting pressure on loved ones.
My husband’s dementia is not as severe as my mother’s was. He was in hospital during Dec. After almost 4 weeks there, he was admitted to rehab in — and then full-time in — NH. He still is sometimes very agitated about wanting to come home, paranoid about my intentions and everyone’s, and belligerent that he will leave there and get a taxi to bring him home.
It is maddening that the disease has created in him the lack of awareness about his actions (destructive) at home during June-Nov. So, he has no comprehension that the level of care he requires now is greater than what we can provide for him at home. Even when he seems less confused, in perspective, he still doesn’t comprehend.
At home, she won't have to sit in a wet/dirty diaper (when/if that becomes an issue) for 30 minutes or maybe the next 3-4 hours. You will know exactly how much she is eating/drinking first hand - what is written into a facility record may or may not be accurate. You will know if she falls down at home. You might not know for sure unless you find bruises and ask at the facility. You will probably recognize something is not right - UTI, congestion, pain, etc - long before facility employees who are trying to get to the next patient.
If you have the means to pay for her care in the home - I say take her home. Let the caregivers do the bulk of the work and you be the daily visitor or company in the room with her. I would say personal care like this increases lifespan because certain illness and falls are better avoided. Not to mention, if there are intermittent periods of lucidity, she is around someone she may recognize. Even if that doesn't happen, you can see first hand that she is well taken care of.
Should she become violent, other considerations may come in to play, however certain medicines (that she would also get in a facility) can be dispensed at home.
As others indicated, what's more important is quality of life, not length. The final stages in many ways are not really "living." So, trying to make a decision about whether to bring her "home" or not should not be based on trying to guess how long she might live, but rather what would be best for her and you.
Some concerns:
Moving is very hard on those with dementia. It can bring on confusion, anger, a host of undesirable behaviors. It can also result in additional setbacks. Many times the "home" they refer to isn't the one you think it is!!
You didn't indicate how long your wife has been in the facility or how long ago she was Dxed (or showing signs.) The second of those two is more important - first signs. There's still no way to tell, but there is a huge difference in the current estimates of life expectancy when different dementias are at play. Sometimes it is mixed dementia, so more than one type afflicting them, which impacts the averages as well.
From one web site I checked, mom had about a 4 year window, from the date of Dx, for vascular dementia. Since we never really had tests, etc, I can only go with her being early 90 showing signs, and 92 when we moved her to MC. She lost the battle to a second stroke (one around Labor Day, the second one mid-Dec), not dementia. She was over 97 at that time, so she outlived the "average", and spent 4 years in the facility. She was well cared for, always clean and alert when I visited, any tumbles or questions about anything, they contacted me right away, etc. The QUALITY of the facility had a good impact on the QUALITY of her remaining time. She was still pretty feisty after the first stroke, just hindered by some loss of control. Just before the move, living alone, she injured her shin. It was infected and could have killed her then.
If she has only been there a short time, try to give it a little more time. She needs time to adjust and you do as well. If you have explicit concerns, work with the staff on addressing your concerns. Quite possibly your reticence could be the current restrictions because of the virus, and not being allowed in to visit. That also might just need a little more time to wait out the vaccinations. Since those in facilities are among the first to get them, and your age would qualify you to be vaccinated, perhaps when everyone is done they can allow you back in?
If she has been there a long time, perhaps you just miss being with her, being locked out? Again, give that a little more time - I should think soon enough after all residents and staff have been vaccinated AND the more elderly family, like yourself, would have also had the shots, so it should be safer to allow visits again.
Another option to consider is moving in with her. IF it's a MC unit, rather than a NH, and she's capable enough to have you sharing the room, you could be together AND have care. Or move into AL is there is one associated with the facility. It might be less expensive than buying and retrofitting a place, and then you would have care for you as well, and be able to visit more often.
MORE CONCERNS will be in a reply to this comment.
First is your capability:
You indicated your wife is 92 (at the time you created the profile.) Your age would be similar, we can guess. Caring for a declining person with dementia is a demanding job. Even if you hire care-givers, what would you do if one can't make it for their shift? Would you be prepared, both physically AND knowledge wise to take over for that entire shift? Agency hires usually will send an alternate, but they could be late, no backup available, unfamiliar with your wife's needs and routines, etc. Just trying to run the household is bad enough, but to have to juggle people and schedules too?
Domicile:
You mention condo, apartment or private dwelling. You would have to ensure whatever you choose is handicap accessible. If your wife is still mobile, you'd need bathroom alterations, ramps for outside steps, block off or avoid any interior stairs. Some of these can't be done in an apartment. If she isn't mobile, but has to be moved with a wheelchair, you'd have to ensure the doors and halls were wide enough, have a lift to assist moving her, a ramp for outside stairs, etc. Would there be backup systems in place, such as generators, in the event of power loss? Loss of heat or A/C could be deadly for the elderly infirm.
Equipment:
Would she need a hospital bed? A wheelchair? A transport chair? A Hoyer lift? Some or all of these could be provided by hospice, if she qualifies for that. Otherwise, you'd have to get these in house before she moves.
Location:
How far from the nearest medical facility would the residence be? If there was an emergency, keep in mind the care-givers one hires for in the home are generally CNAs - nursing ASSISTANTS, not nurses. Generally they assist in caring for the person, but cannot do what a nurse can do. They are not even allowed to dispense medications. In a facility, they would have to have a nurse in charge, and sometimes there are doctors on the staff as well.
Purpose:
Is she near end of life? Do you want her near so you can be with her for that time? If she isn't near end of life, are there concerns about the facility and/or care provided? Would the place you buy suit you after she passes? Do you already have a place she could move into? If so, why the need to buy/rent something else?
The move:
How would she be moved? If she is mobile, you could probably get her home okay with a car. If she isn't mobile, can you transition her from wheelchair to car seat and back again, safely? Can you get her out of/into bed?