Soo mad

blacksparky

Please everyone pardon my rant here. I am so sick and tired of my family always questioning my actions and decisions on the care of my DW. Why are you doing this or that, do you think that’s best for you, don’t you think it is time for MC. The reason I love this site is that you all understand my life because you are living the same life. Okay I’m done. 🤔😩

Biggles

Well done great rant. People even relatives just don’t get it, they don’t understand and it’s so hard to stand your ground or just keep on explaining. Hang in there, I don’t care if ‘they’ think my DH is past it I love him he’s my be all and end all for as long as I can cope and I’ll do everything I can, make all the decisions that I think is right for him and me, not anyone else. I’m hearing you. Stand your ground.

Dunc1129

I would always invite the "armchair" family and friends caregivers to come over and spend time with us so they could advise and show me how to be a "better" caregiver. It did not take too long for any snarky comments and suggestions to come to a screeching halt.

midge333

Sometimes, (speaking only for myself) caregivers can be immersed in the situation and miss the obvious. At one point last fall, I was drowning and both my brother and good friend suggested it was time to place my DW into MC. I am glad I listened to them because caregiving was adversely affecting my health and well-being - and I was oblivious.

harshedbuzz

I'm sorry. It's hard to feel judged and unsupported.

When dad had dementia, I had 2 armchair quarterbacks weighing in on every decision which ironically rarely my decision given that mom was officially making the caregiving decisions. It was maddening but at least they didn't burden her with their nonsense.

Mom's sister, who loathed dad (and not without reason), disagreed with mom's choice to continue dad's androgen deprivation therapy for a recurrence of prostate cancer. Dad chose treatment in the middle stages just before he was diagnosed and mom didn't want to over-rule his decision. Treatment was an injection every 6 months. TBH, I agreed to continue hoping that he'd be less aggressive without circulating testosterone.

Dad's brother, of the 45-minute drive by visit at 6-week intervals, voiced his disapproval about placement ("it's not time yet" 7 weeks before he died) and about the lack of TV in dad's MC room insinuating that we didn't want to spend the money (dad couldn't distinguish between TV and reality)

And yet, as I said, I have been on the other side of this as a daughter who was forced to watch this disease consume both my parents. My mother was too close to see the situation clearly. Dad was not a pleasantly befuddled PWD and his care was difficult. He was uncooperative with food, exercise, medication and hygiene. She struggled to get all the tasks associated with running their lives done because he wanted her with him on the couch. His sleep was fractured, and she was sleep deprived. I was there pretty much every other day but he groused if I sat with him so she could nap or run an errand. It was the same with caregivers.

She developed feelings of hopelessness and neglected her own health. She finally agreed to place him and he adapted well thinking he was in rehab. He got better care there because he cooperated with staff. My mother was able to stand down from insisting he shower, eat and take his meds and their relationship improved. But after he died, she had a couple medical crises directly related to self-neglect. Long story, short. She became blind in one eye and was forced to stop driving. This has prevented her from living her best life in Stage 8 and frankly, her inability to get to her many appointments alone impacts our ability to enjoy the retirement DH and I had hoped for.

Not sure if any of this rings true in your situation. But if a bunch of people who love you are all saying the same thing, maybe they have a point.

HB

Dio

I agree that people who care about your well being would advice "time for MC." They may see how caregiving is affecting your health when you don't. However, criticizing this and that may not be helpful unless they can offer an alternative solution. In my case, my family and friends were completely for placement, and not a minute sooner, cuz I was simply drowning. But DH's one friend disagreed with my decision to this day and made me into a villain of sorts. Go figure. At the end of the day, you are the decision-maker. You know what's best for the both of you.

Timmyd

Let us not lose sight of how the financial side of this adds stress and complexity to the decision. Decent memory care can run 10K a month in many parts of the country. Aside from the emotional toll placement takes on the spouse, it can be start of the road to financial ruin (or "spousal impoverishment" as medicaid likes to call it.)

Carl46

https://alzconnected.org/discussion/73023/soo-mad

I have noticed that the most certain experts on child rearing are childless. What you are experiencing is the same.

Donr

I always tell someone the following: If you can do a better job you can take over all of the care.

wose

I know. right? If I hear the expression “your concerns are unfounded” one more time, I think my head will implode. You know you and you know her... do what I tell myself to do… Trust Yourself, but don’t ignore your needs💜

wose

BPS

My daughter always questioned every medical thing. I thought she would question me about what I was doing and was prepared to answer her I thought since I don't know everything any questioning would help me to think through what I was doing. I was prepared to tell her why and unless she had a better idea and was willing to get involved there was nothing else to discuss. I think questions are good if they provide new information or thought but once the question has been asked and answered then it is non of their business. I thought if questioned too much I would offer to let who ever make the decision as long as they were willing to take the responsibility, total involvement hands on and financial.

Arrowhead

I would listen to them and tell them that I appreciate their concern. Then I would tell them that, in the end, all decisions must be mine and that I will be the one who will have to live with the consequences. Ask them to accept what I decide.

CampCarol

@blacksparky , I am with you on your rant. You are not alone, I feel the same way! My husband's sister has told me that she's crying herself to sleep every night regarding my decisions re: her brother's care. And she actually had the audacity to tell me that it's clear she loves him more than I. I am so grateful she lives 1000 miles away and isn't inclined to come visit!