Hello. I feel terrible that I'm not visiting mom enough at her nursing home. It’s on my mind a lot. I'm seeing her this week but it will be 15 days since I last visited by the time I’m able to go due to my work.
She's mentally “gone” but knows me. I love seeing her sweet face and we just talk. She has her own room.
I'm just fed up with myself. I do not drive but it’s not far. I don’t work every single day, but various days it feels difficult to visit, sort of? It’s not the easiest place to go and it’s new to us (relatively). She was sent there in Dec.
What is wrong? What would you do? I'm alone, basically. My husband is busy, my sister out of the picture, and her family visits but they are elderly, too, so it's not very consistent.
1. You have work.
2. In order to survive work you must have time for all the chores and activities of daily living.
3. You have a right and a NEED for some down time.
4. You have said that your mother is suffering from dementia to the extent that she does still know you, and she is still happy to see you. I think you need to reassure yourself here, because when dementia has progressed as far as your mother's has, there is no real way for the cerebral cortex to formulate any rational thoughts about TIME and such. Time doesn't matter, doesn't compute in the ways we think of it in our "normal world".
I think that the fact that you are so disturbed by what end of life looks like in your mother, in the place where she is currently, that you somehow think to punish yourself for it. But truth is that you didn't cause this and you can't fix this, and you have a right to a life.
There are a few things you can try. More frequent visits, and shorter ones. See if that works better for you. Or keep it as it is and see a counselor to help you work out how you are thinking about all this. It isn't within your power to change this. You must learn somehow to let it go, to come to peace with it as it is. Hanging yourself out on a cross in some martyrdom is not going to help your mother, and will devastate you.
Heart out to you in this pain.
I know that others don’t or won’t realize your time. I’ve had one neighbor, who wanted me to “spend time” with their mother. That I worked 2 full time jobs, didn’t mean anything and she wasn’t even my mother.
Another neighbor, who probably felt she had my life in lockdown, merely because I lived right above her. Still not family. But, also, my life wasn’t coming to a halt.
Even newer neighbor. Acts like I should be a free nanny to her child, as if I’m a coparent. No thanks.
One thing that has helped is that I’m friendly with other spouses there. We look after each others’ husbands. For instance, today his wife wasn’t there and Carl can’t talk; he can’t call an aide if he needs something. I made sure his water bottle was filled before I left because he likes to drink a lot due to dry mouth. His wife has helped my husband with things also.
My advice is not to isolate yourself with mom in her room. Take her into the common areas and be friendly. Be interested in residents and their visitors and chat. This makes the time more pleasant for you and it passes more quickly. Truly, being around dementia patients one-on-one can be boring no matter how much we love them. There’s not much stimulation in it for us. No one seems to admit this, but it should be discussed and dealt with.
When my mom was ill, and I cannot tell you how much I loved her, it was so hard going to see her in the state she was in. I had to step back for a bit. It's tough. Everyone reacts and can handle things differently. Don't beat yourself up.
When my dad became ill, he had already moved out of state and it was more harder to visit. I came when I could.
You do your best to visit. Step back when it's too hard and go again when you feel up to it. Don't beat yourself up over it.
Maybe plan a day a week. You will go every other Saturday. Get your husband on board. Ask that he put that time aside. You don't have to stay long.
I also started bringing a ukelele to mom visits, which was more for me than her. But she seemed to like it and so did I! Can I play well at all, no. Didn’t matter. Just 3 chords and some whistling and you have a concert. One day I showed up in a muu muu. Is there a ukelele or anything you can fiddle with and show while you’re there? Doesn’t have to be an epic skill.
I also did a LOT of hollering my my car alone. And post-visit rewards. Usually involving food ( not recommended ) but also pet treats or just reading a paper outside before driving back.
Best to you…
It is depressing to go there, I know, but only a loved one can make sure she is being cared for well. You just can’t count on strangers and care workers to think of your mom as anything other than a job. There are a few exceptions, but for many people this is true. I had to watch over my Dad like crazy even in the ICU at a hospital. They had an attitude like he was a goner, and were not keeping him hydrated well. I know he would have passed away there if I had not been there daily. They would put the food tray behind him, and not even make sure he ate. The people would come in to take the tray, that he had not even seen. He survived and lived 2 years more after that hospital visit. Lots of laughs. good food, movies, and time with family. All with dementia. They do know when you are there. Best of luck to you.
The less you go in, the harder it is to go in (if that makes sense). If you go in more regularly, you get used to the community and it feels more like a second home.
I have other regrets as it relates to my mother, but being there for her isn't one of them. I tried and she knew she wasn't alone. I say this not to make you feel worse, but to remind you that once they're gone, they're gone and it's too late to make any changes.
That said, my mother had a short stint at the nursing home of 14 mos. Some ppl last for years. I always used to say 'if I knew how much longer she would be alive, I could pace myself and make better decisions.' The changes I would have made with her short stint? Probably hiring a massage therapist to come in a couple of times a month. Probably bringing in homemade food more regularly or more takeout for fun.
I did a lot with decorating and flowers to brighten things up. My regrets are that I didn't have a better attitude at times, but she wasn't a very grateful person and the entitlement made things harder.
So if you're feeling guilty, take some kind of corrective action that will feel good to you. Action that you can live with once she's gone.
I know how hard it is to have a loved one in the nursing home. But she needs your love and the workers need to know that she has ppl watching over her and not to ignore her!
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