I am only the child and sole caregiver for my mother. When I'm working I hire aides, since she can only be left alone for very brief periods, and I probably shouldn't even do that. My daughter is away at school, and won't be coming home for the summer. I'd like to go see her for a few days, but Mom said she would not go to a nursing home for respite, though she's done it when I had to travel for work. Mom acts like she's almost jealous of the time and attention I give my daughter. When she calls and wants to talk for an hour or two, which isn't often, Mom will tell me to get off the phone.
There isn't enough of me to go around. I'll admit that I really want time off from caregiving too. If I do go to see my daughter, I could try to hire 24/7 sitters, but the logistics make my head spin and already Mom hates needing to have sitters. Mom agreed to go to the nursing home for respite since I have to go out of town for work this summer, but she says she won't go just for me to see my daughter, which makes me think she's jealous, insecure, or both. Especially since she is okay with me occasionally hiring an aide so I can have a few hours off. I lost it with Mom tonight. I told her sorry, but I have a life and if I want to fly out to see my daughter, I will. I left out the part about how I'd like to visit a friend who's across the country too. And then I felt guilty and selfish when Mom reminded me that she could die any time. Actually, my daughter and mother are close and daughter has no idea Mom gets like this.
How do you balance it all out? I feel like Sisyphus, the mythical character who, for some crime was sentenced to roll rocks up a mountain, and every night, the rocks would roll back down, and he had to get up and do it again, rinse and repeat, forever. Caregiving is like that except the rock get heavier. I promised I would take care of her as long as I am physically able to, and she was a good mother, and helped with my daughter when I went back to school and later work, and I owe it to her, but this is so hard.
Every act of generosity and love should ideally be met with gratitude and a bit of humility on the part of the recipient, don't you think? Your mom is not doing her part, is she?
I would not bargain with her, and I wouldn't feel guilty about taking as much respite time as you need. I wonder how much of your daughter not coming home for the summer has to do with the fact that your mother is there and sounds like the type of grandmother who has opinions she doesn't keep to herself. I know I made myself very scarce during my adolescent years because grandma was always there, sucking my mother's attention.
Grandma doesn't get to call the shots.
Oh, and I have no respect for folks who use the " i could die at any time" line. The answer to that is " yes, and?" Even if your mother were terminally Iill, you need time off.
I've know unfortunate families who've put their lives on hold for years because " so and so could go at any time".
So could you. So could your daughter. It's part of life.
I hope that you are using her funds for respite care.
These conditions often seem to arise with vascular dementia. For my mom, getting her medical treatment for her mental health conditions made it easier to sort out her other health care needs.
Usually the much older generation will refuse to go to a "nursing home" because back when their parents or grandparents had dementia, they were put into a State mental hospital. Back then, there wasn't the Assisted Living/Memory Care like we have today.
Are there any "assisted living" facilities in your area that offer respite care? Mom might like that better as those facilities are more set up like a hotel compared to a nursing home.
I do think that part of the reason my daughter isn't coming home is that she can only handle mom's emotional neediness in small doses. She loves her grandmother very much, and I think it's hard for her to see the decline. When she was home over break she saw how much I have to do for mom, including the gross stuff like the potty chair (sorry for the TMI). After that, my daughter never suggested again that I try to make more money, she sees that I am at my limits.
Mom refuses to be evaluated for depression, though I know that she is. It seems to run in the family, one of her sisters struggled with it, and so have I (though what i have now is just garden variety caregiver depression and burnout). She associates taking an antidepressant with psychiatric hospitals, so she just refuses. One day when she was saying "I want to die" I said "guess what, so do I, but we don't have that choice" and she stopped, so I can't tell how much is depression and how much is attention seeking.
I'm going to have to have another conversation with her that she is not the boss of me, that if she wants to stay out of a nursing home as long as possible, then she won't give me such a hard time about taking breaks, and that whether she likes it or not, that is what I am going to do. When she tells me to get off the phone with my daughter, I just walk out of the room and check on her periodically to see that she doesn't need to go potty. With vascular dementia, some days are better than others.
She'll say "we can't afford it" and I tell her "we can't afford for me not to get a break" and when I lost it, I told her that I have a life too, then reminded her of what a nurse at respite told me, that the number one reason for placement is that the caregiver can't take it any more, with safety a close second.
I'm going to enjoy time with my daughter. It is true that anyone can die at any time, and I and my daughter want and need this time. She'll get over it, and if she doesn't, I'm doing the best I can. Some people are natural caregivers and am not one of them, this is a real struggle for me.
There are some assisted living facilities that offer respite, and I tried that one year, but she wouldn't participate in any of the activities, just sat in her room, and now she needs more help than they would provide. She can't bathe herself or go potty alone, and she's has so many falls that she's safer in the nursing home, plus a friend has a mother who is there and visits when I'm out of town, and that is a big help.
I wish we could all take a vacation and put our family members in respite for a week. I imagine they would complain about our caregiving! Now I feel guilty for venting because it's really not that bad. I don't know how Alzheimer's caregivers do it.
If your mom has a medical dx like VaD, she no longer gets to say "I'm not going to be evaluated for depression". It's part of the standard protocol for someone dxed with VaD to be worked up for depression, because the changes in the brain that occur with a stroke often cause depression.
No longer her choice; it's just what the Doc ordered. It's no longer part of the menu; it's part of the "it comes with the meal" deal.
I respect and am hugely grateful for your honesty regarding the likelihood of one of the reasons for your daughter not returning home for the summer being your Mum's demanding treatment and unpleasant attitude towards you. I hope for your sake that you really absorb those words and never stray far from them. Your daughter does not want to return to her family home because of the way your Mum speaks to and treats you. Yes, there may also be a bit of the idea that she does not want to see her grandmother declining but it is more likely the emotional fallout that she is avoiding, especially if she is cautioning you about it when she speaks to you on the phone.
I believe guilt is the greatest waste of energy a human can experience. There is nothing productive that ever comes out of guilt. It is almost always based on something that has happened in the past and cannot be changed or is projected into the future and may never actually happen. I know this may seem very simplified but in the big picture it almost always boils down to the same basic things. Someone feels they owe someone else something for either payback for what that person did for them, as in a child paying their parent back for bringing them up and providing for them or someone feels they owe someone else something to make up for a wrong they did against them, as in a husband trying to make up for not being as good a husband as he thinks he should have been to his wife. There is also the scenario like your Mum uses of the future, reminding you that time is limited and wouldn't you feel bad if you went off and lived your life and had fun doing things and your Mum died. How are you supposed to enjoy yourself with that on your mind? Again, guilt is a useless emotion as it serves no purpose but to make people stuck. No healthy, whole mother in their right mind would want their adult child stuck at home, not seeing their own child and not having a full, happy life of their own. The operative words there are healthy and whole. That is not criticism of your Mum, just medical facts. Guilt is not benefitting anyone in this situation except your Mum as it is keeping you at her beck and call. My concern is what will be left of you and your health as well as the relationship between you and your daughter when your Mum does pass away?
You need to be using all the tools available to you for both yourself and your Mum. I fully agree that choice regarding testing for things like depression, especially if there is a diagnosis like vascular dementia already in place, are really not necessary. If she has not already been tested your Mum should be tested as soon as possible. Again, any and all tools should be used and if depression is an issue then antidepressants could make a difference for her.
Another tool that might be necessary in your arsenal could be story telling. As someone who has lived her life refusing to lie I would struggle with this one but would do it in this circumstance because I would see the value behind it, by telling lies rather than being honest about what you are doing or where you are going (away for work vs. away to see your daughter), you likely could avoid massive conflicts and outbursts. I hesitated to add this one only because you can only do this if you are positive you can carry it off without having any guilt attached to the lies you have told. Otherwise your trips (and homecoming) will be contaminated and possibly not worth the effort.
As difficult as I am sure it is and as many times I am sure you would have to repeat yourself, I believe you have to start setting very consistent boundaries with your Mum. You should not have to get up and leave the room in your own home because she wants you to get off the phone from speaking to your daughter.
You are in no way being selfish. You made a promise that you would look after your Mum as long as you were physically able to. It sounds like you may be reaching your limits as you cannot keep a job and be with your Mum 24 hours per day. She does not want you to go to a shop at night when she is in bed, a time when you feel it is safe as she is less likely to be up and about which could lead to a potential fall situation. You can just barely leave the room to talk on the phone as you need to be within earshot to know when she needs to be taken to the toilet. You stated you have carers coming in to help and she goes to respite when you travel for work but she refused to go if you are " only" going to see your daughter. I cannot recall from your profile whether you refer to your relationship with your Mum in the past. Was she a narcissist or controlling with you in the past? Is this just her way as she ages or with VD? No matter your answer, you are doing all in your ability to care for her but my concern is that you are doing it to the detriment of you and your life. I asked about your past relationship with your Mum because that will dictate much of where your boundaries with her exist now.
You are in my thoughts as you traverse these challenging times. Lean on the fabulous people here who have years of tremendous knowledge and experience under their belts. Your dilemma has been years in the making so it will not change overnight. Steps can be taken to make small adjustments to the way things are done and how things are communicated. Remember even with dementia words hold great power, both the ones we say to ourselves and the ones we say to others. Choose them carefully and in moments of calmness. Really try not to speak while angry, hurt or frustrated. Most of us are not our "best selves" in those moments and our words usually reflect that.
Take very gentle loving care of yourself. You are worth every bit of effort it takes!
With peace, gratitude and grace XOXO