Parent in nursing home or rehab, but you still have no peace...

I usually ignore such posts but for some reason Janlins hit a nerve. So while I’m a little late to the party- I’ll assume Janlin is still here - and I’d like to ask her a question.

In her final year my mother had pretty severe dementia. Sometimes mom knew who I was but that was less and less as time progressed. Mom was also completely bowel and bladder incontinent. As well, mom was wheelchair bound, could do nothing to assist in her bathing and grooming, at times she could minimally assist with her dressing and finally her dementia was robbing her of her ability to remember how to eat.

Next -

My son “Rainman” lives at home. He was 23 years old then. Rainman has severe autism and a bit of cerebral palsy. He functions at about a two year old level - with some added complications due to the autism. Rainman is completely non-verbal, wears Depends - although if you can get him to the toilet in time he’ll use it - but only with total assist. That means undoing his pants, pulling them down, helping him to sit - then the reverse when he’s finish - after of course, you do the wiping and cleaning, plus you had to stand there the whole time to make sure he hasn’t thrown a wash cloth into the toilet - or worse - his hands. Rainman hasn’t a clue as to how to shower himself but will stand there while I scrub away. He can minimally assist with dressing - which means he’ll put his arms up for a shirt or step into pants. When it comes to eating - Rainman can use a fork - only a fork - so I have to cut all his food. Add in that Rainman “pockets” food which means if your not watching he’ll stuff as much food into his mouth as possible. I haven’t had to Heimlich him in several years but it will always be an issue. Finally there are the fun little ticks that Rainmans autism brings.

Finally - it’s just me and my hubby. I’m a “stay at home mom” to care for our son. I had to quit a job I loved several years ago as I couldn’t find an after-school setting for him. Anyhoo- hubby works long shifts. We live in a home I love - we brought it about a year before my parents started to have “age-related decline”. The house is on the small side - two bedrooms on the main floor but a “bonus” room in the basement with a small 1/2 bath.

Ive had three (failed) back surgeries and am needing a forth. Back during my mother’s final year I had to have a radical hysterectomy. I knew I needed it - had been putting it off to look after my parents, but it hit a crisis point. Btw - daddy passed three years prior to my moms last year.

Okay - so now dear Janlin, I had to place my mother in a nursing home her final year. Mom had been AL with a part-time private caregiver- as long as mom didn’t out-live her funds. But even with the added care the AL asked mom to leave saying her needs were to great. So - the NH was a newer place on the small side - privately owned and the owners had their own mother there. It was definitely on the posh side and mom had her own room with her own furniture. I visited mom twice a week.

Janlin - what should I have done?

thank you Surprise, yes, it is almost like you said, except that with my mom unfortunately, it was always difficult, after my father death, she completely become attached to me and me, feeling her loss, allow that, it was many almost 15 years ago, when she was in good health and I should be firm that time, but I was not and I allowed her completely in a life of my family, which almost ruined my marriage (almost, because my husband still with me, but i dont think that he forgives me for what I did, we never had even vacations together without her). So now, when she will hurt herself if she ll be home alone while I am at work (even if I will have home care aid for about 6 hours, she will not listen to anybody, she will do what she wants and the same will happen again(aspiration pneumonia as she should not be eating solid food, but she doesnt believe in that and does not remember now, what happen to her two months ago). She is Ok in the facility while I am not there, we did yesterday an experiment, my daughter went without me and she was fine, but when I am coming, she is angry, asking to come with me (sometimes even not saying "home" just where I am going), so may be I should try to visit not every day, otherwise I will go crazy too.

Poetry, I don't know if you have children, but I want you to think about a 5 year old on his first day of school. Mama has always been there for him, including him in everything even though she knows she really needs some alone time with her husband. When she takes him into the class room, she has two choices, both which break her heart. She can put him in his seat, tell him to have a great day, kiss him, turn and leave, and close the door so she can't hear or see him any more. She can trust that the teacher will take care of it. Or let's look at the second mom, who hovers and is ready to give in and rescue the boy at the first distress.

What we don't see is that the first mom is faking it; she's scared that her baby is going to fail, or get hurt, or cry, and she won't be there. But she does not let anyone see that and she sets this boundary with herself and her baby. He must go to school. If she is upset, she will pull into a parking lot and cry for a minute, but that's it. Time to suck it up buttercup, and let the boy be independent and have his own life.

Your mom's brain is broken, and she is that child. She can handle being left with caregivers 24/7. She may cry and whine and hurt herself, but with medication, she will lose her anxiety and learn to enjoy her new school. It is tough to be the mom with limits, but we are now our parents' parents, and it is our job to do what is best for them, not what they want us to do. They have taught us to respect their wishes, but when those wishes are not good for either of us, then we must be strong and keep good boundaries. There's even a book called Boundaries by Townsend and Cloud that can help you learn how to do this. It would be good for your whole family.

Be the strong mom, cry in the parking lot if you need to, but give mom what she needs, not what she wants. Visiting once a week is fine! ((Hugs))

If my mother ever agreed to go to an AL facility, I'm sure I would hear constant complaints from her. I've told my brothers that if she does end up somewhere, I do NOT want to be the contact person (even though I am the only local one).

She should be getting in-home help, but she refuses. And I refuse to do the things for her that she could hire out. (Folding sheets, putting them on her bed, cooking meals for her, etc.) She did hire a cleaning service, but they've just gone to once/month (their suggestion). So now she only gets her sheets changed once per month, I guess.

So why don't I go over and help her? Because she micromanages and obsessively controls every movement I make. I can't stand it. And the more you give these elders, the more they expect. I'm already her driver, and she is not happy that I've set firm boundaries on that.

She expected me to do a lot more than I am doing. And I resent that. We don't have a good relationship, and I do as little for her and am around her as little as possible. She doesn't think my time is worth anything, so why waste any of it on her?

I've told my brothers that the future scenario for her might be fall, then hospitalization, then rehab, then a facility. I will not be involved. And I'm not doing any after-care for her. Did that once; it won't happen again (my brothers can take care of that, even though they are out of state).

Many people are horrified at my attitude. But then they didn't suffer the emotional abuse that I did from my mother while growing up.

Surprise, you are right as usual. Yes, I do have kids, and yes, I did exactly the same for my daughter, when she cried first 5 minutes in day care/school, I left and cried at the parking lot. Except that the guilt was somehow not as strong as now...When my dad was dying 15 years ago he was sure I will never leave her in NH, and I am feeling that I lied to him....although those 15 years that she was living with us were very hard for the whole family, she was always pessimistic, negative, and never let us live our lives, and last two years when her dementia starts were absolute hell, especially when my health this year gave me troubles(I was on chemo and radiation half a year). But yes, your advises are all correct, i wish I can write you more often, when I am crying...where are you living by the way? I am in NJ.

Poetry21 - Thanks for raising the question. I never thought about feeding tube when she did her DNR.  It was just let her breath and heart stop, no heroics.  It's something to consider.  No, she has not been in NH, so not my experience, though I did take a 3-day retreat with friends last month, and it was wonderful.. It was in the mountains of Maine where there was no cell reception.  If hubby or doc needed me for something major, they would have had to call the state police to come find me.  My heart goes out to all of you.

Well my Mama has been in Memory care for just under a month. She just got sent to a Geriatric Psych Hospital 2 days ago. Yesterday had to go to the care meeting. Had a short visit with her. This daughter had to kiss her and walk away. Straight out to the parking lot to have a good cry! Whew! This is so cotton pickin' hard. I seem to be on the road and giving up all days off more than when I had her at home. But she was doing nighttime wandering abd lots of other stuff for the last couple off years. But that's a whole other story lol!

Hey Poetry, My sister and I finally had to give up 24/7 care of our Mom, and moved her to a memory care home this month. The transition has been tough on all three of us at alternate times, but we're working through it. I had a lot of assumptions about how this would go, one of them being an increased peace of mind as while we'd still be her constant companions, she'd be with professionals who were trained to handle the medical issues that were beyond us. I was wrong! Not about the professionals, but that my peace of mind has diminished, not increased! There have been several times in this past four weeks that we've both panicked in our hearts and brains and thought "I'm taking her home right now!" Our Mom is not yet at your Mom's stage, but we've dealt with the heartache of this transition by taking deep breaths, seeing where to adjust and improve our engagement with Mom, what to push the MC people on and what to take on ourselves instead, and lots, and lots, and LOTS OF WINE! Have you tried the wine, and a good girl bitch session? It's done wonders for my sister and I to split a bottle or two and cry/laugh our way through the heartache.

I've been chronicling our memory care transition on my blog: https://www.stumpedtowndementia.com/

If you have the time or inclination to read a post or two you might recognize your own reflection in our journey. I certainly recognize mine in yours.

Your deep love and care are evident! Be grateful that you do care, but trust God to do the caring now. Our loved ones feel our prayers and our love. I am reading an incredible book, Caregivers as Confessors and Healers, OCAMPR, Eighth Day Institute. May God grant you peace!

I do feel a little anticipation when the phone rings at night. But, I have become to trust the MC where my LO is and I believe that they will provide my LO the care she needs. I don't need to be in constant worry over that. And, I know that she is getting proper care. Plus, since she is now late stage dementia and declining, she is on Hospice and they are quite helpful. They are another set of eyes on her to make sure that she has everything that she needs and is not in pain.

I do make arrangements for when I am out of town for another family member to be notified if something happens. Now that she's on Hospice, it's expected that there will no longer be ER visits, but, we could get word that the time is near or that she has passed away. We've made arrangements for when that happens too, so, I now feel more resolved about things. There is still a certain amount of stress and I'm not sure if that will ever change.