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lexibrite Asked September 2019

Mother (95) has been in assisted living for a year now. Last month she had a stroke and needs more care. How do I stop beating myself up?

I have posted before and the help I received was fantastic. Now we are to a point where after having a stroke, mom needs more help. The AL folks are certain they can help her, with more care and of course more cost. I have no problem with that and welcome it. Staff turnover has been a problem a couple times, and one issue with a medication error. That person who made the mistake was dismissed immediately after the head nurse found the issue. Unfortunately, it may have contributed to the stroke. Anyway, things seem to have improved for the most part. Being an only child, it is difficult for me to take care of my mom's needs, my medical needs and that of my spouse. I have missed out on quite a bit of my grandchildren's activities too. My spouse and I were snowbirds. Now since we have stepped up the help mom gets in AL, we hope to be able to resume our snowbird activities at least to some extent, if our health will allow. She will not be getting better, dementia is way worse, and she needs help doing most everything and is incontent. Her facility is handling it. I feel guilty leaving town, trying to balance things and just wonder how long a person must suffer like she is. My children are local and willing to help if we leave. I feel guilty....it is hard for me to just leave. How do I stop beating myself up? I need a break too. But I feel selfish. Any advice is welcome.

lealonnie1 Sep 2019
Sounds to me like your mom needs Memory Care, where the ratio of care givers to residents is MUCH higher than in regular Assisted Living. Plus, the idea that a QMAP neglected to give your mother medication that may have contributed to a stroke makes it sound like a place to get OUT of. How can you trust them at this point? My mother, who's 92 and in much the same shape your mother is in, was transferred to Memory Care in late May after a bout with pneumonia, a stint in rehab, and a general decline in physical and mental abilities. She's gotten much better care over there, I must say, which relieves MY mind quite a bit. Part of your guilt and worry, I believe, is due to the fact that you're not confident she's in good hands where she's at. Try looking into Memory Care and see what you think.
Best of luck!
lexibrite Sep 2019
Thank you for responding. You are correct, I was losing faith in the facility where she lives. Now,I do have faith in the facility; although I wasn't pleased for a time. They have taken steps to correct the problems. I have arranged for a higher level of care for her now as well. The stroke further limited her ability to care for herself. Her brother is now in the same facility. It is the best one in our area. There is a memory care facility a little further away; however she did a short rehab there after her stroke and it made things worse. So I will pay close attention and see how it goes before leaving for any length of time. Thanks again!
rocketjcat Sep 2019
Oh I know pretty much how you feel. Scared to leave. We weren’t true snowbirds, but did take 3 week yearly vacations to Florida and so looked forward to them! When I started to worry more about Mom who was in Independent Living I would hire a caregiver to be with her during the day and report to me daily. That worked for a couple of years, but the last time I had to fly back early when she fell and was hospitalized. When she went to the N.H. we cut the vacations shorter, but still hired a caregiver for the daytime who would report right to me. Then we cancelled the vacations all together because I was worried something would happen and we knew I couldn’t relax and enjoy myself, so there was really no point going. My DH was completely in agreement, so we put all that on hold for the last few years. If you can’t enjoy yourself, is that really a vacation? You’re fortunate that your family has volunteered to step up. If you construct a structured plan would that help? Instead of just saying they’ll go over when they’re needed, would you feel better if they had days of the week/hours per day that each would spend with her? The same type of schedule you’d have with a paid caregiver? In fact, would you feel better with a paid caregiver? I know that would be $$ on top of her AL costs already. I see it’s been suggested that you start looking into N.H. but it I’m not sure that would change how you feel about leaving her.
lexibrite Sep 2019
Thanks for responding rocketjcat. Your suggestion of a more structured schedule is a good one. After making some adjustments for a higher level of care, I am feeling a bit better about her care. She did spend a week in a nursing home/rehab after her stroke and it made things worse quickly. So I have had many conversations with her facility director and head of nursing. Things are much improved. Again, many thanks!

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Geaton777 Sep 2019
Lexibrite, I'm also an only child and completely get where your head and heart is at. But I am wondering why your mom is in AL and not LTC or MC if she has a lot of dementia and requires that much help? I'm hoping you and hubby are not the ones paying for her care. If you are concerned about the cost, I recommend getting her into a higher level of care in a good place where you have confidence in their quality, and let her go onto Medicaid. We did this with my MIL and she gets awesome care provided by lovely people. My 90-yo mom lives next door to me and she witnessed the stress we went through dealing with my MILs multiple problems that she brought on to herself. My mom constantly tells me she would never want me to feel like that on her behalf, which, as you probably know, is nearly impossible. Do the best you can for your mom, after that, there is sorrow but don't allow guilt. Blessings!
lexibrite Sep 2019
Thank you for taking the time to respond. When I moved mom to the facility she is in, I set up her care based on her needs at the time. I am there many times during the week, as are my kids. Her treatment was good; however, now she needs way more help. I have met with the director and head of nursing and now have her set up for a much higher level of care. That stroke really changed things and a took some time to get our brains wrapped around just how much. She was in a NH/memory care facility after the stroke for a week for rehab (Sister to the facility she is currently in). She actually went downhill there. My own health is an issue right now also (lupus flair), so times get difficult. Hopefully things will iron out. Many thanks for taking precious time out of your day to respond. Only folks who go through this can understand how tough it is.
gladimhere Sep 2019
Why do you beat yourself up?

You found an appropriate level of care for mom?
Mom had a stroke?
You are no longer to provide mom care she needs?
That you want to do your snowbirds thing this year?
That you won't be able to visit mom while you snowbirds?

Don't. You have done what you can do and what is best for mom. You have done more than many are able to. You have responsible children that will help with grandma when necessary. Relax, enjoy snowbirding. You need to take care of you too.
lexibrite Sep 2019
Thanks gladimhere, for your words and taking the time to help out. I really appreciate your response, and know I need to take care of me as well. Right now my health is an issue (lupus flair). It's very difficult to balance all the things that are necessary. My family and I are doing our best to provide my mom's best care. I know she is safe, clean, fed. The staff at her facility love her. So I guess I just need to get it through to myself that I have done the best for her. Everything you said is right on. Thanks again!!!
BarbBrooklyn Sep 2019
Lexi, did you end up going south last winter? I ask, because you posted last Fall about being hesitant about going.

My mom, post stroke, was in a Nursing Home for 4 1/2 years. She survived several bouts of pneumonia, UTIs and two falls.

During that time, my brothers and I each took many extended vacations.

Our thoughts were that we could not put our lives on hold because mom " might" get sick. We always brought travel insurance and agreed in advance that if mom died, we wait until everyone was able to be home for the funeral.

I also heeded the advice from an elderly friend who told me she missed much of her grandchildren's childhoods because was worried about and looking after her mother. She said in retrospect, she would have been better off getting more help and enjoying the children more.

I vote for taking some time to snowbird this year and let your kids pick up the visiting.
lexibrite Sep 2019
Thank you for taking the time to answer. We did go south last winter. There were few issues and my kids handled them very well. I found it to be very healing to get away for a bit. I think we will go for a while this winter too, or at least that's the plan for now. Her situation has deteriorated since then so I have lined her up with many more levels of help. I don't think anyone can imagine how this affects the family until they experience it. Many thanks! This site is a Godsend.

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