Found in some posts two years ago, that for us, who did caretaking process for years, putting Mom or Dad in NH does not relieve any stress. "Still there was no peace, constantly running, checking the phone for messages and jumping out of my skin when the phone did ring. ..." How to deal with that? I think for me was much easier when mom was at home and although I realize that in her now conditions (dementia, dysphagia, feeding tube) I cant take care of her at home, my stress is even worse. Hard to see here life miserable and can't make any decision to stop it. She has DNR, but nobody is telling me she is dying, it's just hard to see her in such conditions...unable to eat, not much walking (she was very active home, but after intubation and all that medical intervention, aspiration pneumonia), she's weak and not much understanding of whats happening, although knows me and kids....Days, month, years, who knows, my heart is just breaking apart. Tell your experiences, how you deal with that?
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?
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))
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.
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.
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.