I just started reading the posts on this site and it is/and the people here are amazing. I'm 50 years old, married, taking care of my mom who lives with me and who is in the end stages of COPD. I realize now that the resentment, and the guilt that I was feeling resentful, is shared by others. I want to take care of my mom but also realize how important it is to take care of myself. Can you tell me what positive strategies worked for you?
but I stumbled across the comment I made in this thread and it made me cry. I needed to read the words I wrote. It's been a tough 2 weeks adjusting to this next phase of dementia. I'm grieving the loss of my mom, bit by bit. I'm tired. I was accused of spoiling mom because I got out of the bathtub to fix her TV remote. The poor thing has very few things she enjoys anymore and her TV and phone are pretty much it. That's not spoiling her, if I had waited until my bath was done she could have got really confused as to why I didn't come and then possibly called someone and told them some odd story (new behavior). It took 2 minutes to fix it. Besides, one day she won't even know me. :( Anyway, I'm rambling....just typing my feelings seems to help and that simple reminder of, 🎶 One Day At A Time Sweet Jesus🎶 ....and.....🎶Many things about tomorrow, I don't seem to understand, but I know who holds tomorrow, and I know who holds my hand. 🎶 \0/
Also have a plan. How long do you want to do this? If you decide you can no longer care for her, what are your options. It is best to have this plan beforehand, so if and when the time comes, you are not running around last minute. My husband and I agreed to care for my mom for 2 years. She has Alzheimer's and bladder cancer. During that time, I visited memory care facilities and placed her on the waiting list. You can always decline when a spot opens up. Good to have a plan B, you never know what can happen in life and its good to be prepared.
One if the things I have done in order to keep a personal connection with my home so it doesn't seem like a group home or nursing home is I don't allow napping in my living room. If mom wants to take a nap, she has a recliner in her room and I send her there. This may seem petty but I keeps my living room a living room and not sleeping quarters. My home is small and moving two grown women into it was a huge adjustment. For me that is one way of escaping from being a caregiver.
You do not apply for respite care. First you have to figure out who will cover the hours that you will not be there. Then you figure out who is going to pay that person.
There is a local daycare center here that has lunch and various activities....it costs $45 for an entire afternoon....noon (with lunch) till 4:30. That is one option. Another is...hire an inhome caregiver...this will cost about $20 per hour. (Agency costs.....I recommend you use an agency for safety sake).
Mom should probably be the one to pay for this. Medicare does not pay for it. Medicaid only pays if she qualifies...meaning no assets and income below the poverty line. Otherwise...there isn't anyone to pay...so there is no where to apply
I'm sorry for rambling, but I needed this to remind myself of the things I do to keep going. Long after mom is gone, I will be doing many of these same things. :) God bless you as you care for that loved one.
1. TAKE CARE OF YOURSELF - absolutely top priority - you can't take care of anyone else if you are not taking care of yourself.
2. I hired private aides to come in because I am still working full time, or trying to :). My mom had the money for a period of time. That just ran out so now mom is on Community Medicaid which allows the payment of aides in the home - could provide more info for anyone interested, it's been and is quite the process. Also I'm located in NY. Not all states have Community Medicaid.
Yes, I had to get past having people in my home. It's been trying but the ultimate goal is awesome care for my mom and keeping her home and keeping my health, after all, none of us are getting any younger :) .
3. I learned to meditate - I always thought it was a bunch of bunk, but learned that it was not! I take 10 to 20 minutes twice a day, worse case once a day first thing in the morning.
4. Exercise and stretching. I do some basic yoga stretches, also fist thing in the morning. I also walk outside or ride a recumbent bike. Depending on the time available and the weather. I shoot for 20 to 40 minutes, depends on the day.
5. Eat healthy, take supplements if necessary, a good multivitamin.
6. I set mental intentions, which took some time, so that whenever I look at my mom in the eyes, I say to myself "patience, compassion and love" over time it just came natural and that helped ground me while taking care of her.
Those are the primary things I do, what a difference it has made. I am much calmer during the day which is much better for mom.
This is a wonderful forum, extremely helpful. Good luck and take care of yourself.
If I get nothing else done...I research aspects of my future plan. I read about it, I plan, I do.
Everyday. It keeps me sane and grounded.
... And if you don't have good family, taking time for yourself and getting exercise helps a lot. Sadly, this runs thin after a few years. Good family is the best solution IMO.
While my mother and dad did not live with us, I was still deeply involved in their care. They were in a senior "independent" living with assistance, and they needed a lot of assistance. Ultimately they both needed to be under hospice care, not because they were expected to die within six months (although that requirement might vary by state apparently), they needed more and more assistance. It does not cost anything to have a hospice evaluation done. What they can do is give you more opportunities to care for yourself as they do some of the tasks (bathing, OT, PT) with their patients. And I also did some light-hearted things, like putting cheery postage stamps on any letters and bills I paid for them. The last page of stamps I got was of ice cream desserts. They made me smile.
And come back to agingcare.com regularly. It has been a wonderful source of encouragement and information.
I have also kept a journal and writing down my feelings in it has helped I think and the wonderful caregivers here on AgingCare have been so supportive too through it all.This is what has helped me and still helps me now that Mother is gone.
Take care,Lu
Make sure you get protein and veggies in your diet before stress eating. And give yourself a big hug. You are a wonderful person.
Runner-up: respite care at an excellent facility for a week at a time. The idea was to do this every three months - it didn't quite happen like that, but the two occasions when it did work at least allowed me to get some sleep. I'd recommend getting a schedule of respite breaks sorted out as early on as you can.