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

Only a year for my mom so far. I think this is the new normal. With everyone living much older we all need to have a new plan. My grandparents died young. Now we are dealing with aging parents we need to care for plus trying to enjoy important ,moments in our children’s lives like weddings and grandchildren. How do we do it all. My mom is still self pay but I dread the moment Medicaid kicks in. There will be so much involved with that and I’m her only family.

Speaking from experiences in a long lifetime, I have finally realized, and much too late, that when we are totally exhausted, burned out, ill, whatever, and we are unhappy and our lives are affected in a negative way, etc., we must stop what we are doing and decide - are we going to allow this to continue or is it time to think of US. When things get bad, and all too often they do with older people, then decide - I will stay and eventually be destroyed or - I will find another solution, probably placement where they can be cared for, and I will have a chance to save my sanity and live my life while I still can. There is no room for guilt and don't ever feel you have to keep doing what you are doing. You must break the cycle and start thinking of you. This is YOUR time to live.

I have a similar but different story. I have known someone for nearly 50 years and have been a Power of Attorney for about 12 - 14 years. I have gone way above and beyond always taking care of multitudes of problems, one issue after another, you name it - with the highest outcomes of success and an angel to everyone who knows what I do and have done. I am dealing with someone who has mental issues (Aspergers and Attention Deficit) - hardest thing I ever did and now I feel like a fool that I ever took on these duties. I always asked and demanded open and complete honesty at all times and as a team, all would be worked out. The decision belonged to the person I take care of and I could only pray he chose the right one. Well, all of a sudden, he has started going behind my back to people who hardly know him and certainly do not know me or have ever met me. I can't go into details but he is doing things that are highly unethical. I would like to say he is not doing anything illegal and he has every right to make his own choices but it is the sneaky way, behind my back, that he is doing things - and I find out months and months later by accident and wonder if he would ever have told me. I have always been able to fix things but this is one time for the first time, he went so above and beyond and has damaged me in the process. I want to walk away and sever my ties but right now I am not in the position of being able to do that because of some financial issues that need to be resolved. Does anyone have experience with old people with mental issues who are easily influenced by strangers and who can literally destroy someone with their insane beliefs. What do you think about how someone like this can be handled. I was told to call Adult Protective Services and have him evaluated but this would make him even worse and he would know it is me I don't know what to do and it is making me sick. He is a weak person and doesn't want to "be controlled by anyone" - yet he is doing things that will cause endless problems and he will be alone and lonely without any family or a single friend if I walk away. I am at the breaking point. Any advice?

PLEASE, PLEASE, PLEASE - WE WANT TO HELP BUT WE DO N O T UNDERSTAND WHAT THESE INITIALS MEAN. PLEASE SPELL THINGS OUT. THANK YOU. I KEEP ASKING BUT EVERYONE SEEMS TO IGNORE THE REQUESTS TO SPELL THINGS OUT. VERY FRUSTRATING.

Loved One

Assisted Living

Skilled Nursing Facility

PLEASE EVERYONE ---- SPELL OUT THE NAMES, DON'T ABBREVIATE - NOT ALL OF US KNOW WHAT THOSE LETTERS MEAN. THANK YOU.


Now what does LO, AL, and SNF mean? It is pure Greek to me. Please explain.

I feel the same way! It’s been 3 yrs in AL for my mom but another 3 at her home with caregivers. I’m the main person monitoring and helping. I wanted to hang in there 100 percent until she passed away to feel like I really gave it my all and have peace. And to give her what she needed. But it does not work that way with some - like us! It’s a dream we have but we have to learn that we cannot control that and once it gets long like this, we have to respond another way. Step back, boundaries and move along with your life, while managing your loved one. It’s about adjusting our caregiving as their disease progresses. Remember, we did not cause their situation, we are just responding to a very difficult, emotional, long lasting situation the best we can. That’s the truth! Don’t let guilt trick your mind!!

It truly can be like a roller coaster of hell!!!! I've been doing it ten years, in my home and boy am I exhausted! I've had similar experience 3 times at least, of where this is it! But it wasn't and that may sound horrible but you never know what to expect or when in the caregiving experience. We all love our family but their comes a point after giving up so much, and going through so much you just wonder when and if your own life will ever be reclaimed and can make plans without worry or interference. I know I've done right nby my mom and love her dearly but I miss me too!! My life and family and how I thought it would be. Time is one thing we never get back unfortunately so we truly have to take it with a grain of salt and know this era in life shall too pass. Hugs and prayers!!

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.

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.

My father lasted 1.5 years and my mother lasted 3 years. They both went downhill rather fast at the end. They were both 90 when they passed.

My mother is 86 nearly 87 and has been in AL for 8 years. She was falling frequently and fell and broke her ankle. I tried having her stay with us but after a week was ready to die myself from exhaustion. I have a lot of medical issues and am pretty sure had she continued to stay with us I would have died. When I took her to the Nursing Home to stay for Rehab they thought I was the patient. She has had a couple close calls during the past 8 years but always bounces back. Recently since January she has fallen 12 times and AL said she couldn't stay there any longer and now she is in a NH. She has a lot of trouble walking and is totally incontinent and spends most of the day in a Wheelchair. The only saving grace is she has Stage 4 Alzheimers and has no concept of time. So if I come daily or weekly she doesn't seem to notice. I guess what I'm trying to tell you is there is absolutely no way of knowing how long a person is going to have whether they are in their own home, an AL or a NH. When it is their time the Lord will take them home. Sometimes I wonder for what purpose he has them remain. There are some at the NH that are curled up in fetal position and have absolutely no mental abilities but they keep on keeping on.

This like asking how much longer will a 21 year live - everyone is different - my mom was in care for 4 days short of 6 years & died because of gangrene [second time] from diabetes at 92

You never know how good their constitution is & what they will bounce back from - yes it is wearing on the spirit but you'll be glad in the end for all you did for her - hugs from someone who has been there

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.

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.

A few examples of individuals whom I personally know/knew --

One lady has been in LTC unit of SNF for going on 7 years. She will continue on there. She previously lived alone in her own home until she no longer could. After that she resided in a senior apartment until she needed Nursing Home services.

Another lady was in an AL for less than 6 months and then developed an illness that claimed her life.

Another lady was living in a senior condo for 6 years. She then had to go to an AL, where she remained for 4 years until her death last year.

One gentleman was in SNF for 12 YEARS due to Alzheimer's. His wife visited him every day for 12 YEARS. That equated to 4,380 visits! May I add that she kept him spotlessly dressed, clean shaven and never soiled. This woman was an anomaly, since most couldn't keep that up as they've aged themselves and are now caring for their aged and VERY ill spouse. This lady also did NOT possess a driver's license! Fortunately, this lady was OCD. She vacuumed her home daily, was religious about laundry and grocery shopping (never, ever, altering the task days) and never put away vegetables or fruit before washing them with vinegar. She even scrubbed bananas with vinegar. Now some may say that that is bizarre. However, it worked for this lady since she lived to the age of 97 herself.

My late mother was in an SNF less than a month before she had an ischemic stroke, which claimed her life. That Nursing Home told her "Ma'am, you're too well to stay here." Umm - WRONG ANSWER! Dead wrong because less than 48 hours after that statement, my mother suffered the stroke!!!!

So - As you see, the answers will vary greatly.

My mother has lived in assisted living 4 years and memory care 1 year. This year she fell and broke her pelvis in 2 places and is unable to walk and is incontinent. She needs full care and we are paying $6,000.00 a month. She is running out of money and don't know where we can move her after the money runs out.

Dad was 2 yrs in IL, 2 yrs. In AL and now almost 2 yrs. in LTC/NH. I expect him to live several more years. Recently after another fall and break, I thought he was near death, but he has rallied. So I don’t know what he’s made of but it’s some study stuff. He even fell once backwards, hit his head hard on our wood floor, was on a blood thinner with a high INR of 5 and didn’t even get a brain bleed!! They need to study his skull for making helmets! He defies explanation!
So I've learned to cope by not visiting as often as I’m not lucky to have one of those sweet parents.

About 3 yrs , I ran my self ragged for another year cooking etc for her in her home since the siblings refused to admit she needed to not live alone( why pay for what I did for free lol) .
Physically my mother would have lived much longer than she will now. My daughter and I handled her healthcare for the last number of years( as much as my mother would allow) but now due to jealousy my sister and brother have taken over as medical POA so I’m sure that will change her life expectancy , truthfully I’m ambivalent about that. She’s mean as are my siblings . My sister wants my mother’s money and my brother still hasn’t grow up at 63. I can’t fight them anymore, I have major health concerns of my own.

Three and a half years in both AL and MC ( currently AL again), seven moves, 4 facilities, one SNF unit so far.  Just me, no family support.  Was working the first 3 years, now I'm not ( paid work, that is), but my mom is worsening, so I just think how she didn't give up on me when I was growing up, so I won't give up on her.
Like cancer, it is how you view it mostly, and it is really a mind game.  You either deal with it, or you let it get to you.

Please spell out what initials mean? What on earth do these mean:

LO? AF? SNF?

How can people comment if they have no idea what the questions mean.

Right. Your mom might be doing so well because she is in a place with lots happening, but she wants you too. We don't just leave them to someone else's care. In fact, last night I got a call to go convince my mom to take her pills. I got her to take 3 of them and asked if the aspirin and mood stabilizer could wait. Initially they said okay, then the director called and said she had to take the other two unless the doctor could send new medication instructions. Um, it was 9pm. I finally convinced Mom to take them. She was certain they were not her pills. Then her blinds were broken and there were apparently people out there in the dark looking at her and there was no way she was going to go to bed when people could look in her window. So I had to get them to help me hang a sheet over the window. A few days before this I had to go get her to take her bath. At home I could always get her to do things eventually, but I lived there and didn't have other ladies needing their pills and baths too. The thing with my mom is I'm the only person she trusts. So far she does anyway. The caregivers watch as I make her excited to go for her walk, sit on the porch, join the exercise group, etc, all things they cannot convince her to do even if they repeat exactly what I've said to her. I try to not look too much into the future. She's physically healthy and has enough money to stay there for a few years. Then what? Don't know.

It seems she has adjusted well to the assistance she is provided. If you look at this from the flip side, you can consider yourself luckier than some. Caregivers who are trying to keep the patient at home do not get a break at all (in most situations). Take advantage of the fact that others are providing her care and you can be at home with your family. Go when you can to visit. If it needs to be once a week, ok. Use the phone to visit when you cannot go. Take advantage of family trips knowing she is in good hands and happy being taken care of.

My MIL lived in a nursing home for 14 years with mild to severe dementia. My husband has (89 years) been in the care center with Alzheimer's and vascular dementia for 2 years and can only feed himself. His physical health is reasonably good and he eats well, gaining a few pounds every month. His mother lived to 96 years old, so I am preparing myself to see the same or close to that with him. It is tiring. The care center is 45 miles from our home and I am 84, so my every other day trips really take it out of me. I just try to stay positive and accept all the help from friends and relatives that is offered.

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.

I believe it is a complicated answer. You're right, the average stay in a nursing home is 2.5 years which is exactly how long my dad was there. But my mom was only in for about 6 months. That means that there are others who will be a resident in a nursing home for 5 years or more. That 2.5 number is also skewed by that fact that some people leave to return home. These individuals have either improved enough to live independently, moved to a group home setting, moved to a hospice facility or home to die. But your mom is in assisted living. The average stay in assisted living is that low because people probably wait too long to make the move. I believe that your mom could be there any number of years. In fact, being in assisted living will help her stay safe, well-fed, and allow socialization which will help improve her chances of staying healthy. You have not been fooled; your mom has serious chronic illness, but you need to pace yourself. If you are feeling burnt out, ease back on what you are doing. If you are visiting 3x a week, scale back to once. Encourage her to participate in the activities at assisted living. Use the phone to touch base while you put your feet up and sip on a cup of tea. If she has any family in the area, delegate. Remind them that mom would love to see them or get a phone call from them. Having cared for mom and dad for several years, I realize that they are always on your mind and in your heart, whether you are actively with them or not. It's like a constant low level stress that spikes when the phone rings. That is not healthy for you so you need to come up with ways to lower that stress. Watching a comedy that really makes you belly laugh, exercise, aromatherapy, a night out with friends, meditation will help a lot. Protect your sleep too.

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 :(

My mom was in AL for almost a year. They put her on Rehab floor for PT after she became a two person assist. She loathed PT, and they explained to my mom that if she wanted to go back to her AL apartment she had to get stronger. She didn’t do well in AL..and she said that she was over AL and wanted to stay in SNF. They moved her to the third floor where the hairdresser and activities were. She was living life. She made friends and was always busy with whatever was going on in the Common Area. She would get annoyed with me sometimes when I came to visit and she was involved with what was going on. She was able to get her hair cut and permed when she wanted. She even folded towels for the hairdresser. My mom had Dementia and CHF. She was in SNF for three years, always healthy and I was told she had the least medications on the floor..of course that changed the last few months before she passed. She was always grateful for the staff as was I..

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.

Until they die.