Sorry if this is long-winded. In short, my Mom has brain cancer (astrocytoma grade III) which she has chosen not to treat anymore, after two successful surgeries, successful radiation and successful chemo. Well, when she went off the chemo with Dr's permission the tumor grew back bigger in 3months than in years.
Another surgery would likely make her blind and lose her vision, more chemo wouldn't do much without surgery.
Ergo, mild to moderate dementia. Terrible memory (not her fault). I live with her, give her meds, keep her company, but she has delusions sometimes (like she's in her childhood home and must "get out") so I have to be with her upon awakening and when she goes to bed to make sure she doesn't leave the house.
Professional caregiver comes 2x/week for 3.5 hrs (has car can run errands) and hospice comes 2x/week to check on things, I am always there when hospice is there.
I have all the typical feelings I see you guys have. I guess here are the worst: 1. I can leave Mom when she's doing fine during the day, but I feel guilty doing it EVEN THOUGH she says it's fine, and it is. Is this typical?
2. I have ADHD and had to move back here from another state. I have been drinking several nights a week to combat the extreme loneliness, guilt I shouldn't have because everyone says I'm doing a great job including Mom... not hardcore drinking, maybe a few beers. She's allowed to drink wine, so I find it hard to resist drinking a few glasses with her when she does. It doesn't compromise my caregiving abilities, I just feel guilty about it. When I can see a new psychiatrist, I never crave alcohol on my ADHD meds...
Like I'd feel guilty going out with friends (that I no longer have in this state) or doing something for myself, even though she's okay with it. Or going to the bookstore without her. I never want to hurt her feelings, even though she knows I need my space too.
Then there's the sort of angst that other family members close by don't do more, when they have resources I don't (a truck, etc)....
She wants less of the professional caregiver, but the family thinks eventually it's going to have to be more. I am afraid to tell my uncle (who pays for it and the family has money for this) that I need longer breaks because Mom has tried everything she could to get less of the professional caregiver....
Sorry you guys. So new to this. And here's what's REALLY frustrating me: She hasn't gotten her free frozen meals in about a month, and I am told by hospice that her new social worker (who rarely returns my calls, and still hasn't met us) is "working on it". That hospice organization also has support groups, but I was told that they're "waitlisted" and I never get a straight answer about where I am in the queue. At least the medical care is good and they're available 24/7 by phone for help, questions, or support.
I',m about ready to find out the social worker's boss' name and politely give them my two cents about the meals not coming without explanation, and her never returning my calls. I *need* to go to support groups to keep my sanity. Luckily the health plan I joined (Kaiser northern CA) has one later this month, might have to pay a non-member fee because my coverage won't be active until 05/01.
I'm in the SF bay area. Does anyone know what drop-in support groups are good? I can take public transit anywhere.
** I can do this for Mom because she actually NEEDS me, and I get SSDI income for depression for my own expenses. She has COBRA coverage, and a great PPO until she becomes Medicare eligible in October.