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


Hello. My 94 year old mom was in assisted living for less than 2 months and got pneumonia and ended up in the hospital. She had some onset dementia before the hospital. She has been there for 3 weeks and recovering and will be going to a nursing home for long term care. Her dementia seems to have gotten worse and I am afraid she will get worse in a nursing home. I don't think there is much I can do for her now other than visit her daily and make sure she is being taken care of. I am wondering how I should handle all this emotionally because it's been tough! I don't know what to do. Also, all my personal plans are on hold. I retired a year ago and most of that year was putting her into assisted living. Very depressing year for me. If her dementia gets worse should I change the focus to myself and start living my life again? I have wanted to move out of state, but that probably isn't a good idea if she is still living. Please help. Thanks.

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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
Helpful Answer (15)

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!
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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?
Helpful Answer (8)

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.
Helpful Answer (8)

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.
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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.
Helpful Answer (3)

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.
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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.
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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.
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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...
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