I've been my mom's caregiver for 2 years. She has dementia which took a bad slide when my dad died. I know I need help with managing everything and am trying to find a way to get that help. I hear myself b****ing and complaining about the same thing over and over. I can't stand to hear myself and reading my comments here a couple days later was an eye opener. I sound bitter, callous, narrow minded. I don't feel those things. But it sure comes out that way. I don't want to be uncaring or impatient with anyone. Certainly not others who are going thru the same thing much less my mom. We are all struggling and coping the best we can. I am looking for suggestions on how to better deal with the negative feelings and how to shut everything off to get a good night's sleep every night.
PACE provides comprehensive medical and social services to certain frail, elderly people (participants) still living in the community. Most of the participants who are in PACE are dually eligible for both Medicare and Medicaid.
www.medicaid.gov
in states
The Program of All-Inclusive Care for the Elderly (PACE) benefits include, but are not limited to, all Medicaid and Medicare covered services:
Adult day care
Dentistry
Emergency services
Home care
Hospital care
Laboratory/x-ray services
Meals
Medical specialty services
Nursing home care
Nutritional counseling
Occupational therapy
Physical therapy
Prescription drugs
Primary care (including doctor & nursing services)
Recreational therapy
Social services
Social work counseling
Transportation
PACE also includes all other services determined necessary by the health professionals team to improve and maintain an individual’s health. PACE programs provide services primarily in an adult day health center and are supplemented by in-home and referral services in accordance with the enrollee’s needs.
This is not easy for any adult child, dealing with a parent as you are.
When you realize your 'self-talk' is critical / self-criticism ...
STOP
and reframe / rephrase somehow positive, i.e, I am doing the best I can in these circumstances.
Arrange for respite care - you need time off to regroup / re-energy / re-focus.I do not know how you are 'trying to find a way' to get the help you need.
- what are you doing to get help?
You are depleted and that is building up daily.
You will burn out. And that 'burn out' will manifest in many ways.
Sleep:
* meditating may help you calm down.
* take a bath 1-2 hours before you go to bed
* turn off all electronics (phones, games, tv, computer) 1-2 hours before you go to bed.
* Whatever relaxes you, read in bed for an hour (or 1/2 hour).
* Talk to others; use / or build up a support network.
- You need to get your feelings out - as you are doing here.
- Lean on whoever will support you. You ARE caring. That is why you are reaching out to us.
* Realize you have lost a part of your mom - a huge part and that you are grieving this loss although you may be / feel too busy to even feel this.
* Give yourself a hug and ask other people to do the same.
I sense you need a good long cry. I hope that you can do this.
We are here for you. Keep writing us with updates.
Gena / Touch Matter
I left work and I'm doing better, more time for mom. I'm not happy about losing income but more important is that I've got less to worry about. You have to heal your conscious and quit hurting yourself. I've totally lost what makes me happy, trying very hard to be me. I'm going fishing! Been 3 years and I'm getting some peace.
If mom has money, USE IT. Don't even think about what will be inherited by yourself or other family. Some family members (and caretakers) get so focused on saving money for inheritance, they exhaust the person trying to do the hard work alone. Not worth it.
If there's no money to pay for night time care, and that's what kind of help you need, make sure you have specifically asked family for help you need. Do not sit around getting angry because no one volunteered. Caretakers volunteer. The others will never raise their hand, but often will do a little to help if specifically asked. Ideally, it would be good for someone to come in and take over for a week or two so you can physically leave the house, the worry, etc. It really gives you a breather to jump back in.
If family no option, contact medicaid office where you live to see if your state has any programs that might help. Dept of Aging should also have office in your area that might offer other resources.
None of us can really give you the bandaid you need to fix this. We do know, however, what you're going through. Our care and concern for you doesn't fix the problem, but know we completely get it. Blessings to you.
Some people won’t agree with me, but once my mom goes to sleep (between 10pm and 11 pm) I use a baby latch to make sure she isn’t wondering around at night. Her room and bathroom is on the first floor. I also have cameras in her room and the first floor. This allows me to look in on her when I get up to go to the bathroom at night or when I feel the need. This allows me to sleep knowing she’s safe.
FYI… For all you that want to tell me I can’t latch my mom in I’ve heard it all so don’t bother. I don’t care or want to hear it your views. My entire family and my mom are aware of my latching the door. So you don’t have to tell me the law, etc.
❤️
this is all going straight into my notebook:
"Why stress? It doesn’t help solve anything and then ..you still need to find a solution after wasting time stressing."
"our mother is changing before our very eyes. Let’s not let it happen to us too."
"I’m taking better care of myself when I learned caregiving takes 10 years off your life."
Either she will keep you awake at night because she needs care, or you will keep yourself awake with worrying.
The only way to get rest, is to get help, if at all possible. Otherwise, you WILL burn out.
You have to decide what your priorities are. If you are not able to care for your mom, who will? It is imperative that you take care of yourself. Even if you need to hire caregivers 24/7 for a while ... if you have any assets, decide how to use them for your benefit, which will also benefit your mother. If she has any assets, use them for her care. You CANNOT continue on as you are and expect to function.
Gena / Touch Matter
Eventually i was switched to trazadone/deseryl that worked well, also. Now i take 1/2 doses and it does the trick. When i switched to the last one dr also started me on Lexapro for anxiety. I had begun to lash out from mental & physical exhaustion. Shocking myself i had to go with the meds and am glad i did.
When I try to sleep I have songs that just go on and on and on in my head. Lol. Then I wake up at 3 am when I realize we are going to lose two houses because of my MIL’s stubborn stupid bad decisions. The first house was $160k. Gone.
I found yoga before bed worked miracles in getting me a good nights sleep. I found a 15-minute bedtime routine on YouTube, which was just right. I’ve also resorted to a few natural solutions when I really needed them. Integrative Therapeutics makes a lavender oil capsule which has been clinically studied to promote relaxation. I’ve also used a high-quality CBD oil on occasion which also helps with deep sleep. Neither is potent like a pharmaceutical, but for me they are enough to smooth out the jagged edges.
I am a busy person who has always had too much on my plate, and yet somehow my mom’s crisis has slowed me down. I take time to sit outside and simply listen to the birds sing. Or walk through the garden without actually engaging in any work. No, I don’t have time to do these things, but that’s irrelevant. If I’m dead or incapacitated, I won’t be getting much done then either, so I’m going to take my downtime when it truly counts. These moments that my former self would consider totally useless are my salvation. They slow my heart rate, lower my blood pressure, give me hope. Nature is a huge tranquilizer. Doing nothing is extremely valuable, particularly now.
What we eat and drink really affects our sleep too. Alcohol disturbs sleep, junk food chemicals and sugars wreak havoc on our systems right when we least need it. I find focusing on good nutrition gives me strength as well, both real and perceived. It’s a form of self care.
However you do it, you must find your peace. We need to be prepared to be in this for the long haul, and it’s critical we stay well. Wishing you the best with your mom, and wishing you peace.
I do take supplements too:
cortisol manager
Calm gummies with melatonin, magnesium and L Thenine (can’t spell yet, drinking coffee now).
Both from Amazon.
I’m also in my state’s medical marijuana program so I sometimes also take a 1:1:1 gummy (THC:CBD:CBN)” the CBN is the one you really want for sleep. But, if you are the only one there at night, I would say to try the Calm gummies and CBD (non psychoactive). I made it to 6 am this morning! 7 hours.
I also use a white noise machine, and I keep my room at 70 degrees and I wear socks.
I think it’s about $125 or so a session. I bought a package.
Do you have POA? Either way , go to an elder care lawyer using your mother’s money . Your mother’s needs will only increase with dementia. Have your mother placed in assisted living using her money . Sell her house to pay for her care . I don’t see this getting better for you with you doing the caregiving for mom.