Siblings don’t seem to care

Thank you sillyblone. It was difficult but God got me through it. I feel horrible for other folks who are going through similar things with little help. It takes a huge physical and mental toll on them. I’m still recovering mentally and emotionally from those 4 years. God bless you.

God will get you through this and loves you! Is anyone helping you at all?

Thank you! Caregiving is very difficult and I am sick of some of the manipulating and playing the victim. He wants your constant attention. I feel like it is easier to raise children than doing this caregiving gig for the last couple of year's. Do. in 2018. I am tired!

There are wonderful support groups for you. Accept the fact that your brother is not there for you or mom or dad.

So very sorry ... will pray for help for both of us. Linda has 2 other sisters. Her one daughter told convincing lies.

Get established with a competent, sympathetic neurologist. Your family can't help you, so don't waste your energy there. Professionals who know the score can help guide you through this. I hope it continues, but the anger I've been feeling has dissipated now that we're established with a neurological practice. The support is invaluable. Reach out and keep looking until you find what you need. Friends and family, wonderful and necessary as they can be, can only do so much. This problem is bigger than the layman can deal with.

That is a very generous attitude. My feeling is that close family members (siblings or adult children) should at the very least be willing to come for a few hours (or a few days) to give the primary caregiver respite or time for errands, shopping or just "me" time. It is important for other family to see first hand what the primary caregiver is living with. A few hours or a couple of days should not overwhelm the family. But bless you for stepping up.

This is true. I doubt most people understand the demands of being awakened during the night with various issues, cleaning up toileting accidents multiple times a day and night, endless laundry, shopping, meal rep, clean up, medication management, managing senior meltdowns, resistance to care, money management, house and yard maintenance, repeatedly calling the plumber from disposal washcloths down the toilet, repeated attempts justifying why outside help is needed to the senior is adamant they are ok, making doctor appointments, transporting to all appointments, trash disposal/ recycling, hauling off massive amounts of trash when company doesn’t pickup due to weather……my dad asked me today, as I was trying to shave him, if I had ever worked at a nursing home. Ha! I said yes, I’m working at one now in your house! He laughed. But, it’s true. I am attempting to place both parents right now (looking for a facility with openings) , as their needs are too great for living in their home without full time (3 shifts of people) around the clock care, which I can’t continue to do, plus work my job.

And, though people say, if there is anything they can do….it’s not really what they mean, imo. I hired an agency last week and they called me while I was out due to problem with my dad. Not their fault, but still…..) I’ve reached out to these people who offer to help, including family and with a couple of exceptions, it’s not forthcoming. I can’t say I blame them. I would never recommend that a person take this on. Maybe, for a short time….like recovery from surgery, but longterm, it’s brutal.

I do understand. My wife has MCI, probably transitioning into the early stages of dementia, so the demands on me are nowhere near yours, but I am a retired internist/geriatric physician who made home visits on disabled patients (many with advanced dementia), and I observed all the things you mention. It is a thankless job but no one will ever do it as well as dedicated family member. Yet, there comes a time when it is more than you can provide. I think the best thing you can do after moving to institutional care is to remain a dedicated advocate for dignified care. Patients with advanced dementia who lack an advocate are often the neglected ones. I've yet to see a facility that had adequate staffing.

Yes, then you know. I was also the sole caregiver for my older cousin (most people thought she was my mom. She was an only child.) that I had to place in Memory Care, before her death several years ago. (Mixed Vascular Dementia/Alz). I was very fortunate to find a small, family operated facility in a rural area where most staff had been there for years. They were incredible and quite unique. They have changed ownership though and I don’t know if it would be a good fit for my parents now, since my dad will need skilled nursing and not AL. I’m exploring all options.

Best of luck to you on your journey as caregiver.