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Starts off fairly easy, then 8 years later you're up to your neck with the situation.
Each caregiver handles things differently. I've never had a "caregiver team". Just the dog and I.
Right now we are running on fumes. The end isn't that far away, and others suggest I put her in a memory care home. I'm already damaged goods and I'll never get back to where I was. Putting her in a home will push me over the edge.
I'm a Marine. We don't leave anyone behind.
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Shermantl Sep 14, 2024
Yancy232, I am touched by your honor—“we don’t leave anyone behind”— but remember that we cannot care for our loved ones if our own personal well has run dry. Perhaps don’t look at memory care as leaving your loved one behind, but as a place they will receive the care they need. There is no guilt in that, and you are worthy of living a life as well. We can do everything we can, but the flip side of that is there is only so much we are humanly capable of doing. Wishing you the best.
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I learned to say "I cannot possible do that".... best to learn very early on when the caregiving journey starts.
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AlvaDeer Sep 6, 2024
Oh, when I first came to Forum about 5 years ago it was Ahmijoy who taught me that phrase. Just say "Oh, I couldn't possibly do that". I LOVE that one.
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I have some things that help with the chaos.
1. Keep everything simple.
There are so many products that help. From eating, dressing, entertainment, shopping, cleaning, you can find things that work and keep life simple. Who knew my 98 year old MIL would love frozen pizzas.
2. Let the patient do all they can do.
My MIL can sit in her chair, with a pull up table I got on Amazon, and use a wet wipe to wash face, put on oil of Olay, and comb her hair. Get her a table mirror and keep all her morning routine in an easy to reach place. I let her spread jelly on her toast. Every little bit is better for them and takes one thing off your plate.
3. Don’t make schedules.
Use a list of what you want done and cross off as you get to it. That way you are not adding pressure and can see all you have accomplished.
4. Don’t shop-order.
Amazon lets you return anything for any reason.
5. Mix up your in home entertainment.
Mix tv shows up a bit, play a radio, use an echo or similar device to play podcasts, read books, play all kinds of music from polka to slow Jazz. Invite a friend over and make it special with a nice snack. Sit on the porch. Plant flowers. Get all the junk mail you can get and let it be Your person’s mail. Play go fish or memory (few cards).
6. If you have the money, hire things done.
You can hire anything you want: food prep delivered, house cleaning, part time caregiving.
7. Do things you enjoy when at home: I read, write, knit, sew, paint.
8. Take care of yourself.
I exercise 4 days and take three off. Some days classes, some days walks, swimming, etc.
9. I have phrases I use. “Let’s talk about that tomorrow.” “I don’t know anything about that.” “Let me see what time it is.” Anything to break the incoherence.
10. Take naps.
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Mythmara Sep 14, 2024
Great balanced advice.
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That you have to attend to your needs FIRST. Then you can give care to others.
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One thing for sure is, you can not be a 24/7 , 365 caregiver. You need a break to care for yourself ! Now can you do 24/7,365, yes you can, I have for 20 years. I thought caring for my mom was what I was responsible for. She cared for me, I should care for her. And for many years that worked. Did I care for myself, somewhat. But there has come a time in my life where a week here and a day there, simply Isn’t enough. Thought I was capable and strong but in reality I was empty. Nothing left to give. Asking and receiving help is not a sign of weakness, a sign of wisdom. So my mom (102) is headed to my sisters, we are going to alternate every 3 months. Life is going to get better.
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needtowashhair Sep 14, 2024
I'm well on my way to 20 years. I passed the 10 year hump a couple of years ago. It was harder when I was caring for 3 people. But now that it's only two, I actually have time to take a nap in the afternoon.
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I have learned that no matter what you do to try to prevent it, falls are going to happen.
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When it’s my time I just want to die quickly.
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I could write a book.

What I'd call critically important:

* Realize that most family members are 'thrown' into a situation involving mental and physical decline (dementia) and that we are not taught nor prepared on how to cope / deal with it. EDUCATE yourself.

- Go to TEEPA SNOW's website (or others), read, buy books, do You Tubes, listen to her webinars (as I did for almost two years).

- Understand that the person cannot 'help' but be as they are as their brain cells are continually dying. They are functioning as best they can.

* Know your boundaries; while being compassionate.
- Set them and clearly state them (if they can understand: (put in writing; work with families members as needed).
- Know you'll have to shift how you interact at the elder changes. Everything is in motion / flux.

* Expect manipulation strategies - it is a form of self-protection as wanting their independence for as long as they can have it however much they have is everything to them.

- Realize they are frustrated, scared, confused, angry.
- Put yourself in their shoes.

* Do not argue with an elder / brain chemistry changing. It will frustrate both of you.

* As needed, tell the person what will appease them then do what is needed for their welfare (which they may not know).

* Keep an elder as calm as possible.

- Listen, offer reflective listening ("I hear you saying xxx") - realize being heard is very important to a person losing their independence. They want to be respected.

* Expect the unexpected.

* Get support (emotional from friends, family, neighbors; and physically: hire caregivers as needed as well as volunteers)

* Realize burning yourself out will be counter-productive to supporting/helping another. You won't be able to do that if you do not take care of yourself.

- Meditate, exercise, eat healthy, get enough sleep, take breaks, respites.
Self-Care is #1.

* Process / deal with feelings - all of them, esp guilt, frustration, anger.
Do not let these feelings build up; if you do, your own health/well-being will be affected as will the quality of your care for another.

It is deeply rewarding work. And working with clients is very different from having the responsibilities of caring for a loved one. Although the work may be similar.

- Realize if a family member, there are years if not decades of behavior patterns established. Understanding this will support a person to 'stop, feel, process, and make the best decision.

- Realize that you grieving the loss of your loved one. Allow this process to happen, get counseling if needed. It is heart wrenching to experience a loved one declining, often in 'slow motion' with dementia.

* Lastly, realize that you can do so much and that is not only GOOD ENOUGH, it is - and it is all you can do. Self and other compassion will serve you well.

Gena / Touch Matters
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Beatty Sep 14, 2024
I vote you do write a book 📚❤️
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Don't let family take advantage of your kindness. Do what you can, and don't get pushed into doing what you can't.
Be kind and true to yourself, first.
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I learned that you should not do any caregiving for anyone unless you are the one that has medical & financial POA.

I learned my lesson the hard way after caring for my mom.
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waytomisery Sep 15, 2024
Absolutely agree with this , especially if the elder is uncooperative and/or in denial of their decline .

We are facing that now , trying to set boundaries with MIL against her lack of planning , and her not leaving DH the tools needed .
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