I'm starting to feel apprehensive about being caregiver for dementia mom, how do I shake that feeling off? Thanks to all in forum for help!

I am assuming your Mom lives with you. It may be that you need now to consider LTC for your Mom. I just answered the same way to another. We have our human limitations. You may indeed be "insufficient" even though you sacrifice yourself 24/7 to your Mom. There is no fix it for this. There is no answer and no answer that doesn't include a goo deal of grief for all involved. I'm so sorry.

If you've read posts on this forum for awhile, you have a right to feel apprehensive about caring for your mom. Many of us, maybe most, didn't find this site until we plunged head long into caregiving, not knowing what to expect or even where to get help. (I only stumbled across it 2 yrs after my wife died). Your doing nothing and waiting for the next crisis, can be the cause of great anxiety. If we only knew what that crisis would be we could prepare for it. But we don't. President Ford's Secretary of State Henry Kissinger once said, “There can't be a crisis next week, my schedule is already full”. Wouldn't it be great if we could limit our crises?

I don't know how you can shake the feeling of apprehension. AlvaDeer states we all have our human limitations. That's right! What's yours? There is nothing like being a caregiver to someone with dementia to test those limits. Although you didn't want to hear the suggestion of LTC, that could be the necessary step both for your mom's well being and yours. Maybe not yet, but sometime.

What you can do is to promise yourself that you'll never put yourself in the position of hopelessness, isolation, despair or even indifference to her care. Your mom's diseases and complications will take their own course. Knowing that, your responsibility is to yourself. Decide when enough will be enough. It's not too early to consider placement. And stay tuned in to AgingCare.

I think this article from Canadian Virtual Hospice has a good summary of things to consider when facing caregiving as the end stage of life approaches:


Considerations for a Home Death

https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Decisions/Considerations+for+a+Home+Death.aspx

Welcome to the forum, Calm 64.

I like that you are acknowledging your feelings about caring for your mom. So many of us felt an enormous responsibility for our parents and neglected ourselves. You have done so much for your mom. When caregiving becomes a heavy burden, it’s time for a change for you and your mom.

Your feelings of apprehension are certainly understandable. You have a lot on your plate. It becomes overwhelming to be a primary caregiver.

Have you thought about speaking to a social worker to help plan for your mom’s future care? Or you could call Council on Aging for an assessment of her needs and go from there. Your needs are equally important to your mom’s needs.

Don’t feel as if you have to be the one to do all of the hands on work. If mom is placed in a facility, then you can go back to being her daughter instead of an exhausted caregiver.

Wishing you all the best. Take care.

Hey Calm64,

You'll never shake the constant anxiety of waiting for the next crisis to happen if there's no one else sharing the caregiving responsibilities with you.
Get some hired help. Also, check out a few nursing homes too. Just look at a few places. Maybe get your mother on a few waiting lists too. It will help relieve some of the constant anxiety if you know there's a Plan B when the next crisis does happen.

Hey Calm, When you find yourself with downtime between crisis, I would really recommend you take time, when you are not under the gun of an emergency, to go and look at and research as many facilities as possible. Start online, and then with calls. Then narrow it down to like your top 5 contenders, and schedule tours to talk to the admins, and see what they really look like, cost, and offer. I was a school teacher, and so I took my spring break several years ago to go and do this. When it came time to move my inlaws into the next step up in care, I knew exactly where we needed to go. We moved them into a place that had continuing care options, close to their friends and church, but NOT close to us--across the city. After only 18 mos there, they had both had a significant decline--especially MIL--and by then had also cut off their ties with their church, due to their inability to understand things, and getting mad over a situation. FORTUNATELY I had a Plan B close to us, which we were able to get them into AL and then only a month later, MC for MIL when she became a flight risk. I am SO THANKFUL that I had done my homework ahead of time and didn't have to make those decisions in the heat of the crisis. SO rather than let your mind work overtime when you aren't in crisis mode, start preparing for those next steps. Just tell the admins you are doing your homework so you will know what to do if/when the time comes.

From your profile:
"I set out to accomplish at least one task a day, one day at a time:)"

That's pretty much how I work... even now that mom has passed on. Once in a while I might have a little more motivation and get 2 or 3 things done, but nothing extensive for sure! Although I didn't take mom in, I was helping her in her own place for a while (3 hr round trip, sucked up the whole day!) and then juggled everything for her (finances, appts, supplies, bills, visits, etc.) for 4+ years. Not quite 3 years also spent to clear, clean and fix her condo to sell it. I could only take so much!

As others said (and appears you have started), scoping out places now is a good idea. Each place will have it's own costs, what's included, extra cost for extra care, etc. Does she have sufficient income and assets to be able to self-pay? If not, is her income under the Medicaid limit AND is she NH bound? Medicaid limits vary by state, and both they and NHs often require the person need the specialized care a NH would be providing. Most states do not cover AL and for those that do, there's likely a waiting list.

One thing Medicaid might be able to help with is some in-home help, if her income qualifies. It won't be full time, but ANY time you can take a break is GOOD time! There are day care facilities, but since it's difficult for her to get in/out of a car, that's likely not a good choice. My mother was initially mobile, then moved to a rollator. I picked up a transport chair, which is lighter and easier to fit in my car, for any place we needed to walk a distance. Once she refused to stand or walk without help from someone, any appts I had to rely on the facility transport or YB for places outside their area.

I hear you on the barrage of calls. Perhaps ask them to stop the calls and just send emails. YB was the contact at one place he found that we looked at. When he didn't respond to them trying to contact him (he does it to me and others too!) they called me! We'd already settled on a different place.

Anyway, after getting the upper level details from several places, check them out in person, when able. Use ALL your senses to check them. If they have open door policy now, go different times of day to see for yourself how smoothly things are going. Relying on ratings and brochures isn't a good way to choose a place! Non-profits for me were much better. It was actually less expensive than the other place (like $800/m) and was a private room, not shared like the other. The focus is on the residents (it was IL/AL/MC), not profit making! It was also the closest place to where I live, maybe 10-15 minutes, so I could visit more often.

It is possible with her various medical issues that she would qualify for NH care - hopefully they have a dementia unit! Now that she's pretty much forgotten who you are, and is more difficult to care for, it might be better to have her in a facility where they have more people to provide the care and you can manage things, advocate for her and visit, even if you are just some random nice person she likes! You know who she is/was, so that's what matters.

Many people do jump in, both feet, without knowing what the future holds. Sometimes we don't realize how deep it is until we are in it! Understanding that it won't get better as time goes on, more likely worse, now is the time to make plans for additional care, either in-home or in facility. It's better to make plans while you still have some sane moments, than trying to scramble when the inevitable crisis happens!

When you do have that downtime use it to recharge yourself for the next unforseen crisis headed your way. I agree make plans now. You don't want to wait til the last minute to make decisions. Make sure her financials are in order and the paperwork is accessible. Look into facilities she may need in the future and see what she can pay for. Downtime may not last forever while you care for your mother as she progresses deeper and deeper into dementia.

Make sure to take care of you and if not yet ready to place her in a facility, get some home aids paid for by your mother to assist you so you don't burn out your body, mind, spirit.

Try not to stress over the decisions you make for your mother - keep her best interests at heart and you shouldn't go wrong too often. If something does go wrong don't blame yourself - forgive yourself and let it go. Find humor where ever you can find it - humor should help reduce the anxiety.

I agree with AlvaDeer. I went through this process with my mom. There's just no wonderful choice because dementia sucks! My mom laughs more and is loved in Memory Care. Most of those caregivers and nurses are a God-send. My mom got tired of her youngest child telling her what to do and reminding her of things. This way I get to take care of her as much as I can and go home, but there are time I still feel great grief and actually think of taking her back into my house, but I can't with my family. I do have limitations. My mind will go back and forth trying to come up with a good answer, but there are none! The only thing that would make it better is if our loved ones didn't have dementia! That's why AlvaDeer is right...there is no good answer that doesn't deal with a good deal of grief. I grieve for my mom almost everyday. Best wishes to you.

A caregiver has to learn to specialize in risk management. So in a way you do end up waiting for the next crisis. But you learn more and more as you go along, and from others here. Find something that is all for yourself and can totally remove you from the situation for a short period of time--reading, or going out in the yard and just soak in the environment. Podcasts on my iPhone remove me for the time and it has improved my anxiety and anger. At some point you will need to find a place for her that can take care of her. Having a game plan for the future can help curb the anxiety--her worsening condition is looming but you'll have a map of sorts. There's a reason for two or three shifts of nursing care in nursing homes--it's hard and one person can't do it all!

If you go to the Medicare website you can find ratings of the facilities that Medicare sends payments to, like nursing homes, hospices, long term hospitals, etc. Nursing facilities are rated 5 to 1 stars, and then it's broken down to health inspections, staffing and the quality of resident care. I found two promising 4 star places that had great health inspections but poor staffing and resident care. I also check the bed count--there'll be better (one hopes!) care with a 50 bed place than one with 225 beds. You'll have less anxiety when you do your research than by just looking online. My brother has been in two skilled nursing facilities busy earning their one star ratings--by circumstances I wasn't able to land him the places I wanted him in. He got Covid and had to be transferred to a second facility that's awful. The hospice social worker is checking into the ones I've requested her to.

This week I put him in hospice care at the facility and I'm astounded at how relieved I am. RNs go in twice a week, CNAs three times a week. They call me after every visit. With hospice there the regular staff seems to provide better care since someone's watching them. When I looked up hospices, there were lots of different criteria but one of the most important to me was the percentage of people who would recommend the hospice, compared to the national average. This hospice scored higher than the national average in every category and so far it's really paid off. Good luck!

You’re asking how to ‘shake off’ feeling apprehensive. Perhaps the answer is don’t try to ‘shake it off’. It’s fully justified, and like any other pain it tells you that something is wrong and may be a danger to you. Use it to fuel your plans for what and when you do next.