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FullCircle Asked August 2019

How long has your LO been in AL or SNF? I’m tired.

What’s the average length of time someone is in AL or a SNF? How long has your LO been in one?


My mother is 84 and has been in AL for the past 5.5 years. I moved her there after quadruple bypass surgery because my father is gone and she needed more help than I could give her being half hour away and having 3 small kids.


She has stage 4 COPD and CHF and while she acts like she’s dying and can’t do anything - she actually pretty healthy and capable she just feels like she’s reached a place where she likes everything done for her.


I was really surprised to read the average length of stay in AL is less than 2 years and wonder why? Is it because $ runs out or most people enter at a much higher age? Is she just not as sick as most in al?


I admit when she first moved in I assumed she was on a downward spiral and would not live more than a few years but 5.5 years later she’s pretty much the same.


It makes me think she’s not as ‘compromised’ as she acts and she just likes having everything done for her. She’s never been one to push herself and I have always felt like she could die at any second so I do whatever I have to to make her happy.


I’be completely burnt myself out over the past 5 years thinking ‘this is it’ but she literally bounces back from every illness and is fine.


Not sure what the point of this is other than I feel like I’ve had an light bulb moment and feel like I’ve been fooled ;-( I adore my mom but I’ve given so much to her and I don’t have a lot left and I literally can’t imagine doing this for another 5+ years.

Upstream Aug 2019
I just posted about this two days ago. My dad has been in memory care for 2.5 years, his facility is about ten minutes away from my house. He's reached the point where he's peeing and pooping all over the place, non-verbal, spends a lot of his day in bed although he's still ambulatory. He's only 81 and in this shape :( He was very athletic all of his life so a lot of his vital health measurements are still very good. I know he would never want to live this way and it's just awful, draining, depressing, etc. etc. There are residents in his facility that have been there for 10 years!!! Yikes, I can't imagine another 7-8 years of this going on. I can only admit it here, and to my husband, that I will be so relieved when it's done - for his sake and mine :(

lealonnie1 Aug 2019
My mother is 92- 1/2 and living in Assisted Living and now Memory Care for exactly 5 years. Dad died 4 years ago June and she's even happier without him. She's had pneumonia twice, rehab once, 6 trips to the ER, three hospitalizations, 36 falls resulting in broken ribs and broken sternum, congestive heart failure, 1 stroke, AFib, severe neuropathy and chronic vertigo, depression, moderate dementia, stage 3 kidney disease ....and a partridge in a pear tree. She's now wheelchair bound and has been incontinent for 3 years, but by God, she's doing just fine. Dad lasted 10 months in AL, mother will likely last 10 years. All those falls and no serious injuries. We only knew of the broken ribs and sternum bones (in varying stages of healing) due to her most recent hospitalization and subsequent CT scan. We only know of 3 dozen falls......she kept the rest a secret because she was able to get herself up without asking for help.
I have no idea what will ultimately be her demise, or when it will happen , but at the rates shes paying for Memory Care, she'll run out of money in 2 years and I'll have to apply for Medicaid.

God help us All, huh? Between all the moves (6 moves since 2011), all the trips to doctors, hospitals, rehab, dentists, oral surgeons, ENTs, physical therapists, specialists and on and ON, I'm exhausted. And why I get so riled up when people on this forum talk about us dumping our folks off in facilities so we can be rid of them. Really? Is this what being rid of my mother feels like? It would be funny if it weren't so sad and draining.
Dianne38 Aug 2019
Omg, I totally get where your coming from. The partridge in a pear tree was Lol funny!! My mom also has a lot of those among other issues. If this look like what the "golden" years are all about, I'll pass!!

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Upstream Aug 2019
Got a call this morning from nurse at dad's memory care ALF: dad was found crawling around in his room during the night. Monday, his recliner was removed from his room because he's peed and pooped in it so much (he confuses it with the toilet). Confession: I am so ready for this to be over and every single day I wake up and hope that it will be the day.
lynina2 Aug 2019
So exhausting physically and emotionally. Please take care.
ArtMom58 Aug 2019
I understand! I live an hour away from my mother who is in a nursing home and it's been pretty emotionally exhausting, not to mention the weekly trips, sometimes twice-weekly. Over the last 2 years, I have thought my 86 yo mother was going to pass three times. The elderly can no longer die once they're in institutional care. She's been rushed to the hospital three times for emergencies. My mother is on 6 meds to keep her alive. She can't walk anymore, so she sits in a wheelchair, but would prefer to lay in bed. She has dementia, but also is aware of her circumstance. It's very sad. I want to be done with the responsibility of overseeing everything -- I can't enjoy my life anymore -- I haven't had a weekend for me since January 2018. It never stops!! There are a lot of us who understand your circumstance. Best to you.
orlando101 Aug 2019
You could be describing my mil, but my husband feels compelled to visit three times a week. We go nowhere and do nothing and previous to this, we went through three years of one parent after another declining and my husband has had to step in, alone, and take over everything (with my help). It's affected both of our health and I sometimes feel when it's finally over, we will feel too old to do any of the things we'd planned to do these past few years and in the future. Btw, after my mil's last hospital visit and her many meds, we decided to move to hospice care and there will no longer be any trips to the hospital. Why? She's never going to "get better". That said, she seems to be doing much better with this added level of care so take that as it is. Best to you too.
anonymous272157 Aug 2019
I don't know if we can go by Average for anything.  Each person has differing health issues, differ in dementia causes and results, and even when we had my aunt figured out, her health and abilities would change again. She worked hard at staying with us and not in an AL or SNF. When she no longer could, and I was burnt out and sick, she spent 1 week in hospital, 4 weeks in a 'rehab', then 5 weeks in a Memory Care Home.  She was finally accepting and happy, when she died of pneumonia. All of it is beyond our control or knowing. Keep resting, caring for self, and be there for your kids.  Do what you can without compromising your own health ( I know, easy to say, but not do).  I'm sorry you have to go through this.  Keep sharing here.

keepingup Aug 2019
You take care of yourself. You take care of your children. I had a narcissistic mother who told my family everyday that she was on death's doorstep. She lived long beyond what was predicted, until ninety. We were left exhausted, stressed and wondering why did we work so hard for someone putting on a show? Really, make yourself a priority and know that what you are doing for her is ENOUGH.
slp1684 Aug 2019
My mother is narcissistic who tells me everyday she should just be dead. She is a drama queen, and manipulated, to the point where AL staff listen to her as she lies in drench breifs and doesn't want to get up, when she actually can. It's so draining, while I am taking care of her at AL. But for some reason, I never stop caring for her despite her personality disorder. Yes she has dementia
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Morass Aug 2019
I feel for you and everyone on this site. When it's finally over, most-like myself-are physically, financially and emotionally spent. It all seems like a bad dream to me, now, and at 56-in poor health-I'm left to start over and pick up what is left of my life. Meanwhile, 6 months following her passing, the doctors, nursing home, all the vultures still have their hands out hounding me for money. We were always self pay. They took everything and have the nerve to now send me bills from 3 years ago that make no sense. I really hope things work out for you. I've been there.

orlando101 Aug 2019
I ask myself this every day. If you had a loved one pass through these stages relatively quickly, then I know you have no idea what it is like to experience this lingering and the frustration of having no timetable or ability to make plans for your own near future. As the spouse of someone dealing with this I think it's even harder. My life is completely on hold for my mil. We are going on nine months of decline after hospitalization after move from independent to assisted to nursing. (Not including almost 10 years on and off of one crisis or another with three aging parents). A little over a year ago my husband was diagnosed with a rare disorder (triggered, I believe, by the stress of relentless care taking) and his sibling is terminally ill and declining (both late 50s) so he cannot help. I've had to pick up a lot more to help my husband, which I gladly do, but I want the focus to be on him and -his- health. I never knew my mil well - we lived states apart and she and my fil visited us once in 20 years (we went to visit them always). My mil has been in and out of the hospital for numerous issues, is on many medications, and is completely incontinent and is bedridden. Two months ago she had a uti, was taken to the hospital and the Dr. said he was certain her kidneys had failed and she would be gone that night (we have said goodbye in the hospital now three times in dramatic and awful episodes - that - is emotionally exhausting). She's back at nursing care. The same. I also think she likes the care and attention. She gets to spend time with her son 3x a week and acts as if it's a regular visit at home, except she's lying in bed, prone, falling asleep not able to even sit up by herself. She does have dementia but it seems mild for now. I am angry every day, it seems, feeling like my husband is losing out on what may be his "best" years in case his condition gets worse. We are stuck with this. We didn't choose it. Unfortunately I think the reality (having been through this with three other relatives) is that this is a profit making industry that's bottom line is to keep people alive. My husband calls it a depressing prison even though it's a top-notch facility (which is also a place that will most likely keep people alive the longest as there are many there that are self-pay like my mil). No one is "living" there. They are being fed, changed, bathed, in a daily cycle that is not life. They are either in bed or sitting in a wheel chair asleep. There is no conversation. I'm sure some people think this sounds callous. I already put in my will that if I end up at this stage, to take away all meds and put me on hospice. I feel for you and for everyone here. We watch most of our friends enjoying pre-retirement, travel, daily life, good health, second careers or businesses (we've worked hard, been through a lot and were so looking forward to enjoying life now) and yet we are in a strange limbo dictated by someone's else's life. I am afraid for my husband's health every day and try to convince him to visit less often and take time for himself and us (not even mentioning the strain of this on relationships). A generation ago, this was something very few went through. Now it is getting more common and taking a tremendous toll on many. Hugs to all.
belindaparis Aug 2019
I 100% agree with you! Medical treatment is keeping us alive longer but neurology has not kept up.
the body is still healthy while the head is dead, my mother lived the last few years of her life like that! I’m with you about NO heroic measures for loved ones in advance stages of dementia. When ever I am diagnosed, before I get too bad, I’m going to arrange to go where I can drink the kool aid.
Rainmom Aug 2019
Looking back and trying to remember the years I’ve tried so hard to forget - with little success...

My parents stayed in the house much longer than they should have. I know - that’s a real shocker, right?

When they finally moved to “Independent” Living my dad was in pretty bad shape and only lived another year and some change. He was only able to live there with the help of paid caregivers and my mom, who was in pretty good shape - physically, that is. Mom had the beginning signs of dementia, which I failed to recognize, and a nasty little Oxycodone habit. My father passed the eve of his 85th birthday. Mom was 84 at the time.

Mom went on to live another nearly four years in IL with the help of a paid caregiver and by sucking the life and soul out of me.

A nasty fall lead to the change to Assisted Living- which turned into a brief pit-stop as they 86’ed her after two falls in ten days.

The final stop in a small, privately owned nursing home lasted ten months.

The thing is - if it had been a straight up physical thing, my mother would probably still be alive today. This month marks three years gone.

What finally got her - in the end - was the dementia. Mom forgot how to eat and had a strict No Feeding Tube paragraph in her Advanced Directive. So, basically- she starved to death. It was brutal to have to witness- although she didn’t appear to be in any discomfort or pain.

These type of “long goodbyes” are so cruel. The mind wears out but the vessel keeps chugging along. I was continually bouncing between frustration, devastation and calm acceptance. I’d leave from visiting her on Friday- so sure that that was the last time I’d see her alive - only to arrive on Monday to find her participating in Wheelchair Aerobics.

Finally, I got hospice on board. I needed the extra sets of professional eyes to help me gage what to expect. You might give them a try. They really helped me.

ESP505 Aug 2019
My mother turned 95 last month.  After almost 2 years of trying home-care arrangements, falls and safety issues meant getting her into Assisted Living late in 2014,where she resided in the "independent" living area for 3 years and did fairly well, but worsening dementia symptoms prompted a move into their Memory Care Unit in November 2017.  Physically she has mobility issues and increasing incontinence problems, and spends more time in a wheelchair than trying to use the walker anymore.  Staff keeps her from isolating herself in her room, partially to ensure she socializes more and more importantly to prevent falls - she forgets she can't just get up and walk so they're able to keep an eye on her better.  So, we're approaching the 5 year mark and yes, I so get your weariness.  I think the dementia will eventually be her demise, insofar as that acts on her physical problems.  She has had moderate to severe symptoms for at least 2 years now and seems to go back and forth between those two levels...and when she's in the severe stages, it's heartbreaking.  Delusions, over the top anxiety and paranoia.  The back and forth is exhausting and painful.
It's hard to tell how long someone can/ will go on, especially when their physical challenges are "not that bad" for someone at age 95.  Mom had a sister who lived to 96 without dementia symptoms, and one who lived to 99 with moderate dementia.  I've learned to just accept whatever the day presents when I visit (once a week, I limit it to that for my own mental health), ensure she's continuing to be in good care, report any concerning delusions or hallucinations to the Director of Nursing for investigation (they've encouraged me to do that, even if I'm pretty sure it's all in her head - at least twice a UTI was responsible and they were able to address that), and remind myself that God will take her, when it's her time.  Above all - keep coming to this site - we're all in this together.  Take care of yourself - when you're really, really tired it's your body and mind telling you that you need to carve out some serious self-care.

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