I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......
Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?
Nobody warns you about the smell.
I really feel that they put people on a healthcare assembly line now. It keeps churning out the money for the insurance and healthcare companies, which have gotten huge. I remember a time when we went to the doctor when we were sick. Now we can't even get an appointment when we're sick, because schedules are tied up with follow-up visits that are scheduled every 4-6 months. But WHY?? If we do get sick, we have to go to urgent care.
The healthcare system is really silly now. My doctor wanted to do a bone scan on me. I declined and said there was no reason to, since I wouldn't take the drugs and I eat well. She made me feel like I was non-compliant by refusing the test.
I get tired of them looking for all these diseases, making sure you're clear. My great problem, I guess, is I don't have an overwhelming desire to live until I'm 100. I know what being old and being maintained by pills is like. I want to check out of this life before my mind leaves.
I hear others saying "I wish I could stay home all day" or "its ok he's watching grandma he's not doing anything"
Second, is the distrust of the patient. She regularly tells others how I can't be trusted with giving her the correct dose of Coumadin even though her doctors repeatedly try to assure her that I have a better idea of what she needs than they do!
Sorry for your loss of your Dad.
I completely understand the invisible part. That feeling goes along with not feeling heard. People are rarely listening, and then, only hear about 75% of any conversation with good hearing. I don't know if reading is different, but wanted you to know I heard you! If you stick around, your presence will be acknowledged, people will identify with you and where you are at right now.
Maybe others will click "follow" on your wall, and when you speak up, you will at least be read by others, and others on the forum have lost a loved one. Yes, it is hard to read when others are still going through what you have. There are threads, if you have seen them: "Loss of a loved one",
"Love notes from caregivers who have lost someone", Life after the loss of a loved one"- or similarly worded that will come up in the search bar.
I am so glad you did not actually disappear, and feelings can change over time. So keep reaching out if you can. I love it when others write just what I was about to, so then it saves me time. You have put into words feelings that I have carried for just a long, long time.
Hoping someday that you get the validation you are seeking, hoping it just comes to you that you are loved.
Give yourself some time.
Right now i am living with someone who has it hot in here- who sweats in the winter?ugh
Mom seems to be breathing her last breath one day and is improving the next. I am not in a hurry for her to go nor do I want her to linger but I want to know when.
The comment "I don't need outside help - I have you." sounds just like my mother. Setting boundaries is hard, I know. I think the only thing harder than setting boundaries with your parents when you're young and helpless is setting boundaries with them when they're old and helpless.
You need to believe in your heart that you have the right to set limits on your mother's claims to your time and energy. It gets easier with time, if that's any help. It gets easier with support, which I hope we can offer you here.
It may help if you remind her, repeatedly if necessary, that you still need to take care of your own life even though she's old now and needs your help. If she says "Why the rush?" you can always say "I have things to do at home." That is always the reality, after all. After you do her laundry, you need to do your own laundry. After you clean her kitchen, you go home to a kitchen that also needs cleaning. It is easy for elders to become very self-focused and forget these obvious facts of life, but that doesn't mean they can't be reminded. That approach actually works with my mother - maybe it will work with yours as well.
Good luck!
I understand the irritation you felt when she used to ask what the hurry was. On the occasions when my brother telephoned my mother, the first words she always said to him were "when are we going to see you?" - which he took literally as a request that he visit her, which made him feel guilty, which he resented. Not that it ever made any noticeable difference to how frequently he visited.
But you have nothing to feel guilty about - you're already spending much more time with your mother than used to be possible. Isn't it a sort of compliment, that she'd like you to hang around a bit longer?
I hope you do find a congenial volunteer, that would be great for your mother. But it'll still be generally true that no one is more interesting to a mother than her children are, however often she sees them.
Then the whole thing starts all over.. Eunice fussing over Mama 'till Mama insists she sit down!! Until Eunice sits down, then Mama says in her sweetest southern drawl, "well it sure would be nice to have a pillow behind my back" Lol. 😂