My mom has a muscular disorder similar to Lou Gherigs. She can only move her feet and hands and it's getting more and more difficult to transfer her without a lift. It takes a full half hour or more to get her settled in be. First the potty, then take off her outer clothes and bra but leave her slip on. It's pretty hard because she is stiff in the arms and has little trunk strength to keep her upright. Adjust her underwear, put the heated rice bag on her feet, fix her pillow, wait for her to tell you where else she's uncomfortable, finally get her settled in and she calls you back in ten min. because she has to go pee. It's so frustrating!! I put a pad on her and tell her to just dribble in that but she insists she has to go, so up we go back on the commode and she pees 2 drips and back down on the bed to adjust all over again. I understand that she has to have someone do everything for her cause she can't move but tonight I told her she has to wait 10 min to see if she really has to go pee. She got so upset at me and told me I was mean, etc. I explained that it wasn't her fault she had bladder spasms but she had to take pity on her caregivers ( my 6 family members and myself take turns caring for her, we do shifts). I told the night caregiver to only let her get up 4 times to pee and the rest of the time tell her to go in the pad. Is it cruel to not help her every time she says she has to pee at night? She gets so exhausted from not sleeping at night then the next day is ruined. I feel guilty being "mean" to her but it feels sometimes she has to go pee for something to do. She is never left alone, activities are available and family members always in and out visiting so she is not neglected and don't think she's doing this for attention. I'm feel dread when I hear her garbled voice say she has to pee or poop once more!
Just fed mom lunch..those Hormel Compleats are great! 2 mins and add a bowl of fruit and you have lunch. Great time saver. My mom has no problem with sodium and at this stage of the game, I'm not really worried about preservatives. Just gettin her fed. And she loves them. Win win situation.
Have a good afternoon you all. I'm curling up with a Robert Ludlum book. Bourne series. Love this stuff. This one is The Bourne Betrayal. Not written by RL cause he's dead now, but reads just like him.
Ltr
Hope you all have a happy day. Enjoy the small happy things cause very few big ones will happen for awhile.
Hugs to you all.
Ann
We all get so many good ideas from each other. What a blessing it is to talk to others who understand.
(If this were just about convenience for the night caregiver, I just say, hey that's the night caregiver's job. But I think this about Mom's welfare. She really would do better on more uninterupted sleep.)
You seem to be handling things very well. Good for you!
Hope you get some rest. Hugs to you!
I say all this just to let you know that we do understand your plight. Most of us are going through the same or similar circumstances each day. The mind of the elderly is unfathomable. Even if there is no clear dementia, they are often a challenge to care for. Most of us are dealing with someone with dementia so it's nearly impossible to make a point with them.
I started giving my mom Melatonin at nite to help her sleep thru the nite. It's over the counter and safe. But I still have to tuck her in real tightly to discourage her roaming at nite. That way I can get more sleep. We must think of ourselves. If I don't sleep, I can't deal with the stress and work of caring for her. Then what? Nursing home? NO! Better to be firm and possibly hurt her feelings than send her to a NH. You have to be the parent now and make the hard decisions for her. She is not capable any longer. Tell your siblings that. If they don't understand, too bad. You're doing the right thing for your mom.
I wish you all the best. You are doing a wonderful thing for your mom. Don't beat yourself up, there's plenty of other people who will try to do that for you.
My Mom is in Assisted Living and since she no longer has to take care of my Dad,
she has become more focused on herself. If I tell her I hurt somewhere, she almost ignores what I said and goes on to tell me of her pain somewhere. My Mom and Dad moving out their home within a week of each other and having to live apart has been the most painful experience of my life so I can understand how hard it must be for you. What gets me through it is that I want to enjoy the time I have with them and that helps me a great deal. I sometimes speak angrily to my Mom and she realizes she is being difficult and then apologizes and then I apologize too.
How do your Mom's other caretakers handle this situation? Do they have any suggestions? You and your Mom are blessed in that you have so many others to help take care of her and spend time with her. I'm sure you will figure out a way to handle this very frustrating situation.
I would definitely look into some of the medications that would help bladder spasms and double check for a bladder infection. A catheter is an option, but it is a difficult decision to make and even though it makes caregiving easier, it can add other problems like increased infections. Is a bedpan an option? The resistance of incontinence pads is very common.
You are very fortunate to have so many to help. I would ask why does the night time caregiver have to get up to help your mom, if she is paid then it should not matter what the patients needs are. She should be awake and doing what needs to be done.
Young children are in a "me me" world because they could not deal with the enormousness of the world if they were not. Not that I think you are implying your mom is a child (and even with children I do not believe in forcing behavior - I believe in understanding the underlying need and working with them and not having unrealistic expectations of them), but remember she is not a child and has lived an independent life. Your mom's world is very limited now. It is very difficult to lose your independence and dignity. Though I have Multiple Sclerosis and have experienced some limitations, I have never had to be in the shape your mother and my own mother were in. My mother was never one to complain either. Of course, she never complained even when she was totally bed bound. But your mother's complaining and being self centered is just what she is going through and how she is expressing a need she has. Just because she is not physically the same as she one time was does not mean she has lost her rights and dignity. She still deserves to have input about her life.
Also may be she is not ready to go to sleep at night? My mom and I spent many nights up watching movies, me reading a book to her, or just talking. As people get closer to death, sometimes their sleep patterns change to where they stay awake more at night and sleep more during the day.
Best,
Kitty
Is your mother of sound mind? If so, I would hope you could be more convincing with her than I could with my husband. I can understand that you feel bad about being "mean" to her, and I can also understand the need to somehow reduce the number of re-dressing, re-settling sessions per shift. I hope a doctor can suggest something. Good luck to you!