Hello friends and/or fellow PWMEs
I thought I'd give you a quick update.
I am still at my parent's home almost 2 months after coming down on short notice when my mother went into the hospital. Luckly, my friend/roommate's parents also live in the same community so when she came down for a visit, she brought me a few things. After 6 weeks using the same pajama bottoms, for example, it was nice to have another option.
On the positive, I have had some offers of help, clothes to borrow, food and meals from people around here know my folks, that has been so wonderful. Someone even sent me a box of books to read!
I also set up services from the get go to help with home care. Twice a week someone comes in to help my mom with bathing, and a nurse comes in 3 times a week.
However, the bulk of the care since she has come home has fallen to me. It doesn't matter how sick I am on a given day or hour, it has been a lot. Because she is so ill, and my dad has mild dementia, I don't think they realize the many many little things I do each day to keep this ship afloat.
It's a miricle I haven't relapsed. Still, I had one day where I was in bed with a crash most the day and a fever, weak and shakey. I came upstairs to get water at one point and was hit with 6 or more demands/requests. Or yesterday when the POTS was so bad I was blacking out standing, it made no difference to my mom needing fresh coffee. With all the issues in my family (I have two sibblings with mental illness), that fact that I am sick has always been trumped by someone or something else and the trend continues.
Not to mention the people around here who have told me outright that there is no reason for me not to sell my house and move back here and take care of my parents, because hey, the life of a disabled woman without a husband and kids has no value.
Anyways, the day to day, moment to moment is pretty hard to the point I don't think I can write about it.
This week I have booked a two week break to go home. I set up extra stuff/services for when I'm gone, but I'm almost sure that something will happen and things will fall apart here. At least once a day my mom is addled (by drugs and or illness) enough that she forgets to eat, has no idea what time of day it is, if not monitored, overdoses on medications, etc. etc.
I feel quite guilty leaving, however, on the other hand, I realized after five or six weeks of telling EVERYONE that this was more than I could handle without a break, that I wouldn't get a break unless I actually left. For example, some days my father litterally follows me around. If I come downstairs to rest, he comes down and sits staring into space in the room next to me. If I go outside to sit in a chair, he follows, if I come back into the living room he follows, get the idea???
Most people just don't know how serious this kind of unknown illness is! I dare to say that what you are suffering is more than your mother does! I dare to say that the reason you are taking care of her - not the other way around - is because you are still not kind enough to yourself to realized you are sicker than her, or at least equally invalid.
ReplyDeleteI don't blame you. I had been like that for decades, helping people who were so much stronger than me, just because my personality entitled to be at service all the time! I quit, quit to be that martyr because I eventually realized people can be so selfish if you let them to be. Of course they are not consciously selfish, but their lack of experience and insight let them fail to see some obvious! And eventually when you lie on bed they would be nowhere to be seen. And worse, they don't believe you are sick, you need help, and you have to spend your precious little energy to explain to them, as if you are guilty as charged...
Well, that's the lesson I learned myself.
Hope you give yourself more time to take care of yourself.
gail - i am glad you will get to have a "break" and head back home. i hope the plumbing issues have gotten resolved and you'll actually have some time to recharge while you are there. thinking of you - jen
ReplyDeleteOh, Gail, my heart breaks for you. To be so sick and dealing with all of this with your parents, too - not just the physical demands but it must be very hard emotionally, too. I understand to some extent because I had to take care of my sick kids while I was sick for years (tbut I had my husband to help most of the time). I just can;t imagine what you have been through these last months.
ReplyDeleteTaking a break is a great idea - very smart. Look at it this way - of you don;t take care of yourself, you won't be in any shape to help them. Glad there are at least some local friends. neighbors, etc, who can help out a bit.
My thoughts and heart are with you. Glad you are getting a break - rest as much as you can.
Thinking of you -
Sue
Thanks for the update, Gail . I was just thinking about you the other day and wondering how things were going.
ReplyDeleteI can only imagine how difficult it has been on you living and dealing with your own illness as well as looking after your parents. Imo, I think taking a break and going home is a great idea. You are also ill and do need to look after you. This is a point that one of my alternative practitioners made very clear to me.
Continuing to think of you.