What should I do when my mother goes into long-term nursing home?

Moves are very hard on the elderly, especially when there is a dementia diagnosis. Each move causes further decline. I provided 24/7 care for my mom for four years until I just was not able to tolerate my dysfunctional family dynamic any longer. Nearly two years ago she was placed in memory care which she never fully adjusted to. Her husband passed four months ago, he was very good about visiting her daily. Mom is in the late stages of dementia and has developed additional significant behavior issues since his death. Perhaps on some level mom is grieving but doesn't know what is wrong. She has been told she needs to find a new place to live which has been achieved with the help and recommendations from hospice. Hopefully this move will help her feel better. Without the assistance of hospice this would have been impossible to negotiate without their assistance. She will be moved tomorrow, actually today.

You should not place your life on hold to care for mom. I understand your hesitancy about moving out of state. But, you do not need to provide for her care now, you are an advocate for her. Has she been evaluated for hospice? Another idea would be to find a geriatric care manager to visit her once or twice a week and become her advocate, report to you,and the two of you work together for your mom's benefit. This could work out very well.

Was your 94 year old mother living independently, then, before the move to the ALF less than three months ago?

Yes, this must have been a heck of a year for you. Really, really hard going; and just at a time when you might reasonably have hoped to start taking things easy and enjoying the freedoms of retirement.

The thing is, though, seeing how rapid your mother's decline has been recently, um... She is 94, which by any standard is a very advanced age. What I'm struggling to say gently is that you may not have very much time left with her.

In which case, if you were to delegate her care and move out of state, you might come to regret not having seen her through.

You've had a whole series of terribly difficult decisions and saddening events to cope with; and if these have involved a lady who has always before been admirably independent and capable it's all the more depressing for those, like you, who love her.

So make allowances for yourself about the sheer scale of adjustment you've had to go through. Perhaps your best next step might be to have a brass tacks discussion with your mother's geriatrician or GP about her prognosis, and try to get a handle on what sort of timescale can be realistically estimated.

Meanwhile, remember that you don't have to make any firm decisions about your own plans until it suits you to - they'll still be there, as soon as you're ready to pick them up. And in the interim, make time for yourself a priority so that you do get some respite from your worries, even if it's only an afternoon here and there in the short-term.

Are you having to manage this situation on your own?

YOU, yourself, do nothing as mom is being taken care of in the long-term care unit of the NH. That is where you would want her and not at home, where no trained medical professional exists. Yes, it's really tough now for you; I've been there. But bear in mind, enjoy those visits now because they WON'T go on forever.

It sounds like you are handling things exceptionally well! Be proud. How should you handle all this emotionally? That is the seriously challenging part, isn't it?

Be gentle with yourself. If you do something that later looks like a mistake, learn from it and move on. No one is perfect; all any of us can do is our best, and you are!

Communicate with other people who will be gentle with you. Avoid people who criticize or are always gloomy (if there is anyone like that in your life). AgingCare is generally a safe place to vent or ask for encouragement.

Try to minimize the either/or thinking you do. Either you stay available to your mother/or you get on with your life is a pretty discouraging proposition. But are there any ways you can combine these, at least partially? Can you replace either/or with both/and? I will both stay near my mother and start preparing for the next phase of my life. I will both see that my mother has good care and also start focusing more on my own needs.

Avoid feeling guilty. Your mother's dementia is Not Your Fault. That your mother got pneumonia is Not Your Fault. That she now needs more care is Not Your Fault. You are doing your best to deal with these things and you have/are doing a good job. If you absolutely can't banish the guilt (it is hard) at least push it way to the back of your brain, and don't let it make any decisions.

My suggestions are
1) Be gentle with yourself
2) Associate with people who are gentle with you
3) As much as you can, replace either/or with both/and
4) Don't make any decisions out of guilt

I agree with all that's been said above, especially what Jeanne said about avoiding either/or thinking. I'm in a different but similar position to you. My mother now has live-in help after needing my almost constant attention over the past 6 years. I have wanted to move to a different state for almost as long as I've been living in my mother's state of choice. I'm sort of resigned to staying here until my mother dies, because she still relies on me a lot although not for her day-to-day needs.

I picked a town about an hour away from my mother that offered a bunch of features that appealed to me, and I moved there. I've started working part-time again and working towards the day when I can move into a more responsible role with the organization I'm with now (possibly in another state as this org operates all over the country). I'm trying to enjoy my life as much as I can and prepare for my future even while stuck in a state I'd prefer not to be living in. I would really love to be able to move but I know I would feel guilty if I couldn't be available when Mom needs me and I also don't want to leave my one local sister to handle all my mother's needs on her own. It's working out okay for me, for now.

Having said that, only you can know what's right for you. You don't have to decide anything today. Good luck!

First, pneumonia can cause dementia type symptoms. It also is dangerous to the elderly. Now she iss in a NH, see her as often as you can. Go at different times of the day to keep personnel on their toes. Make sure, if not her primary, what doctor will be caring for her. Check the make sure she is on the meds she has been on and make doctor aware you want to be made aware of any changes. Have hospice come in and evaluate her. I would put moving on hold till Mom seems to be better.

Prepare yourself for a wild ride and good luck. I've taken care of my terminally ill mother and now my disabled father for 18 years now. MIT grad, 2 patents, founder (with many others) of company bought by Cisco, started my own Engineering company - all gone. As for your immediate question - If you have a caregiver - companion for your Mom, have them call you or Skype/video call you every day they are there so you can see her.   My father is in long-term care now.
I will be taking my Dad to live in Thailand and start a caregiver company so that he and I can live there. in the US, I pay $3k a month for a caregiver 100 hrs /month. In Thailand, I can rent a HOUSE AND hire 2 caretakers a MONTH and have money left over.

My heart goes out to you. I agree all the others, it seems like you are doing a good job. Dementia and having to watch out parents as they decline can be emotionally devastating. But as hard as you try you cannot change the way things will unfold for your poor mother. But you have done a great job and have given to your mother a great deal. You are not failing her just because her circumstances have changed. Remember, part of taking care of your mother is realizing when it is not longer in your hands or your capabilities to do so on your own, and finding a suitable place for her to live where she will be well taken care of is a BIG part of that care. I had to make that same decision two years ago after taking care or my mother with Alzhiemer's for several years. It was the most difficult and painful decision I think I have ever had to make. I cried more tears then I knew I had. But it was the right decision for me, my family, and my mother. I would recommend, based on my own experience, that you do not move too far away from her tho. That way you can still go see her and spend what quality time you can with her. My mother died this last Nov. and I am so glad that I did not move too far away so that I could still see her and express my love to her. Thankfully I was able to visit with my mother the morning before she died. It has been a comfort to me as I slowly grieve and recover. I can tell you, now that my mother is gone and I can move on with my life, it is still a struggle and I am not there yet. The decision on what you do will ultimately have to be your own because you are the one that will have to live with it, but this forum is a great place to vent and get ideas and to know that there are many people in your same position and that we understand and care for you. You will be in my prayers.

pneumonia elderly people very confused has does moving into a different environment.making a decision to move to another state or even another city when a person is under a lot of stress would probably be better to delay.I have relatives that live to see 100 + 4. only God knows how much longer she has but you only have one mother and even if she doesn't recognize you or talk to you I think for your own peace just being there to hold her hand and stroke her hair and talk to her even if she doesn't understand you even if just once a week would benefit you even if it doesn't benefit her.you need to set aside part of each day where you can just sit and be undisturbed and just let your mind rest and let go of all your anxieties and heartache and yes the guilt and just be still and no that God sees you.even though it is tough you should be thankful you had 94 years with your mother because many orphans would like to have their mothers until they were 19 years old at least. will lose a lot of loved ones in our lives but lose your mother probably is the toughest loss of all exceps the loss of a child. you sound like a very strong person and clear thinking. when a person passes away we can see someone for bereavement but actually the bereavement when a person has dementia starts long before the person heart stops beating. I am certain you will be able to find the right answer or yourself. make it and never regret it because done what you thought was best based on what facts you have to make this decision on.

Wow, I can relate. Mom (91) in AL and I just retired two years ago. I also visit every day--but not for long. After about forty minutes she is tired and wants a nap.

What can you do? Start putting together some relationships with other people. Ask people to join you for coffee. At first it feels awkward and uncomfortable to do this. But I found that people like to be asked to join me for coffee. They are flattered.

I also found that you don't need to ask too many people to make life more interesting--say 5-6 people once every two weeks or so. And my dance card is filled in, I have something to look forward to, I have contact with others, etc.

and the coffee..and the doughnut...

When my mom started to have health issues, I moved her closer to me. Then, after a few falls and respiratory issues, she went to a skilled nursing facility. That move was extremely hard for both of us and the only way it was made easier was for me to be there to see my mom every day. My feeling is that although our loved ones are in a facility that helps with their health issues, they still need an advocate for so many things. The most important aspect of the visits is to let them know they are loved and their well-being is a priority. I had to put my life on hold, sometimes even a lunch with a friend, but when my mom passed, I had no regrets about spending as much time with her as possible. I adjusted to her schedule, had some meals with her, joined in some of the activities, and most importantly, developed a relationship with the staff. For all the work and sacrifice that is involved, for all the sleep that is lost and worry, it's the most rewarding experience and I wish she was still here. For me, I wouldn't feel comfortable not checking in every day as to how my mom was doing. Her room needed decorating for different occasions, she may have enjoyed a sweet treat, new clothes, or watching a program together. True, my mom didn't haven't dementia, but I think the company of a loved one is always felt. I wish you all the best.

Spend as much time with your mother. My mom passed away under hospice care in a long-term facility. She was well-cared for better than had her at home although she wanted to come home. I was with her 24/7. My life was on hold but no regrets because I did it for the love of her. She deserved the best. She was 93.

All good advice. You need to reclaim your life and feed your soul. The one thing I have not heard is going to a caregivers support group. If you can find one for dementia or Alzheimer's specifically that would be good. Hospitals usually have them. Your local Alzheimer's chapter will know where they meet. If you can't find one, start one. That's what happened where I live. I was amazed how quickly it grew. It may feel like you're alone but you aren't.

Look into things that you enjoy, even if it's temporary until your mom passes and you can move. Join a choir. Take art, jewelry or sewing/needle arts classes through local stores. Take college classes or adult education. Join a travel group or book club. You'll meet people with similar interests, learn new skills, feed your soul. Make sure your mom is well cared for and then take care of yourself.

You have to give to yourself so that you have something to give to your loved one. Not enough caregivers do this and are left empty.

I agree with the thoughts about staying near for a while so you can be part of her ending. I also wonder about her home and furniture and things like that. If there are a lot of personal things to find a place for, staying near would be much easier than moving away and trying to do this from afar. I am in the process of getting rid of things for a friend of mine for whom I am POA and who is now in a memory care apartment. It is taking longer and requires more thought than I ever realized it would in order to do it "right". I think of it as a part-time job. But, I have no desire to leave the area, no other agenda to follow for my life, so there is nothing pulling at me to not do this. And it took me a long time and several experiences to finally learn that family is most important and to act that way. My friend is not family, but there are no family members near that could do this.  We joke about being "brothers of another color" since my friend is a well educated and kind black man.  It is my privilege to help him now in this way and he feels like family.  Good luck with this care. I found so many people who had good advice for me in caring for my friend and hope you have that same good fortune.

You have done so well, caring for your mother. Now she is in an environment where other people are looking after her. It's time for you to do something for yourself, make new friends, start a new hobby, anything for yourself. You are not neglecting your mother in any way, just making time for yourself. Be encouraged. Arlene Hutcheon

Sounds like you did all you did. If she has dementia, there is nothing you can do.

I hit wrong button - didn't mean to stop saying nothing you can do about dementia. However, NOW IS THE TIME FOR YOU TO LIVE YOUR LIFE - GO AND DO IT AND DON'T FEEL GUILTY. YOU EARNED THIS TIME AND RIGHT.

My heart goes out to you - it's such a difficult position to be in. When I could no longer handle taking care of my mom, we had to make the very difficult decision to put her in a nursing home. I spent the next two years visiting her often and making sure things were being done that might have not been addressed otherwise. As far as nursing homes go, this one was probably better than a lot of them but they were always shorted staffed, and of course there were many who really cared about the patients but others who were only punching a time clock. I felt guilty over no longer being able to take care of Mom and I personally couldn't have handled moving further away but everyone is different and that certainly doesn't make you an uncaring person. There were so many days I wished I could just stay home but then I was so glad I had gone to have lunch with her and see her smile and say I was hoping you would come. These last 4 years have been the hardest of my life so far having Mom living with us for 2 years then watching her decline over the next two years until she passed away in January. Good luck and most of all try not to feel guilty. I have been on an emotional rollercoaster since all this began and it's going to take some time to recover from all of that besides dealing with the grief of missing her. She had developed dementia over the last year but still knew us so I am thankful for the time I had with her. Good luck to you!

I agree with Joann......No decisions have to made right this second on moving. For now Just Breathe. I can so relate to the retirement plans. Had big fantasies about those but of course "all good plans go awry". My mom passed away in late Aug. 2016 of dementia/alz. I still take care of my 95 year old father. I've had the opportunity to take many long trips and "I" felt I just couldn't do it. I can sure do it for a 5 to 7 days but after that I get very antsy and feel I need to get back to my dad. It's on me. I'm sure my son who is almost 40 could take care of everything but I just wouldn't feel right if something went wrong while I was gone. You have to do what is right for you not me. My only thought or suggestion is that your mom NEEDS an advocate (we all do). Just make sure she has someone that will be right there with her through all medical and physical issues if you can't or if you decide to move. Also, I agree that so many different medical issues such as pneumonia or kidney/bladder infections can make issues worse with further decline as GladImhere said. I saw it with my mom. Every fall, every cold, every everything. Remember, Just Breathe for right now. Get your mom settled and try to relax. Then you can put things in perspective. Good Luck and God Bless

Rejoice!

I am sure it is tough letting go of the reins once it reaches "that time" in our caregiver role. You have nothing to feel guilty about in taking care of your mom and it's not your fault that "things" have now changed for her. Pneumonia at 94 is a serious setback for her, I am sorry for that, and nursing care will be needed in either a facility or at home with a lot of professional care, possibly hospice. We hate to see our moms ill, dwell on losing them, watching any downhill 24/7 is "doom and gloom." If she stays in the facility I suggest staying close by, visiting often, different times, letting professionals hear and see your care and concerns. They, but more importantly your mom, need that now. As a caregiver to my brother with ALZ I have noticed that he doesn't fare well with any changes. We can't and must not blame or question ourselves when they are set into place. It sounds like you are a loving and caring daughter, thinking of your mom. It doesn't sound like a move away would be the best for you right now. It's ok to anticipate what you will do when the time is right. Changes and decisions are sometimes made for us. Stay strong and God Bless.

To HappyTravelling: Realistically, who is going to pack up everything, sell their house & move to Thailand? I'm sure the health laws stink there & what about cost of transport in case he dies there & needs to be buried in U.S.?

Actually, the health care system in Thailand is pretty good. But I still agree that it would be a fairly drastic move for anyone who had family to make: "The Best Exotic Marigold Hotel" has a lot to answer for when it comes to putting daft ideas into people's heads, if you ask me.