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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.
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.
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
Be kind and true to yourself, first.
I learned my lesson the hard way after caring for my mom.
We are facing that now , trying to set boundaries with MIL against her lack of planning , and her not leaving DH the tools needed .