The Caregivers' Thread

[Peach Wookiee]

^I'm glad you were able to do that, Tora.

My granddad still drives at the age of 89. And his older sister only gave it up about three years ago at the age of 101. She only drove in the day for a while in Eau Claire.

[Sector 7]

Wow! I just found this thread.

I am still taking care of my mother. She turned 74 on Friday. Mom had a stroke in 1999. In 2001, my sister told me I was to take care of Mom, because she didn't want to any more. I found a home we both could live with, just outside of town in the country.

It was very difficult combining two very different households into one. Mom's taste in decor is Early-American Yard Sale (no two items in her home ever matched). My tastes are more refined with matching furniture, drapery, etc. It was quite the mayhem for awhile. Then my niece returned to our home at age 12 and I raised her again. My sister "is not cut out to be a mother" (her words, spoken to her children... God forbid!). I learned long ago to open my heart and home as Jesus taught us to do.

After a fall 4 years ago, Mom has been bedridden. While it has been a struggle, due to my own physical issues, we have been making it work. For the Americans, look into CAP Care (Community Alternative Programs). It has helped by providing payment for Home Health Aides, Respite Relief (paid help so you can "get away" when necessary), medical supplies not covered by Medicare (diapers & incontinent supplies, etc.). The program in North Carolina has a waiting list. To be blunt, an opening occurs when someone on the program dies.

CAP Care is designed to keep people out of nursing homes by providing an alternative at home. The theory is that it is less expensive to keep your loved one at home than to place them in a nursing home. Each state has varying requirements for the program, but it may be worth checking into it.

Our family has a history of Alzheimer's Disease from both sides of my family. Mom and I are both taking Aricept, as a preventive to Alzheimer's. I think Mom will outlive me, although I hope not. Mom only has me to depend upon to take care of her.

I won't mention names, because this person is a friend of mine, but one of our own TrekBBS members lost a loved one in December. This person has been their primary caregiver and needs the prayers of those who pray. This person has been a great support to me over time and I shall forever be grateful.

[Tora Ziyal]

^ That sounds like a really good program, Sector 7. However, from what I found online, it's specific to North Carolina.

Sounds like you've more than got your hands full. Prayers for you and for the bbs member you referred to.

I kind of giggled at your description of the decorating issues. That would be me. In fact, I would probably lose my mind if I had to combine households with someone at this point in my life.

[Peach Wookiee]

^I Googled the CAP program, Tora and there's a program in my state. My family doesn't qualify for it, though.

[Tora Ziyal]

^ Okay, I must not've looked far enough.

[Peach Wookiee]

I just added in my state as part of the check. There are probably more around the country, I'm sure.

[Sector 7]

Tora Ziyal wrote:

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^ That sounds like a really good program, Sector 7. However, from what I found online, it's specific to North Carolina.

Sounds like you've more than got your hands full. Prayers for you and for the bbs member you referred to.

I kind of giggled at your description of the decorating issues. That would be me. In fact, I would probably lose my mind if I had to combine households with someone at this point in my life.

Try these links for more information for your state. At least, it will give you a place to start:
1- http://www.mdcsl.org/advantagecallba...ate=map_search

2- http://www.benefits.gov/benefits/bro...state/state/MD

My hands may be full, but I would not trade Mom for anything... warts and all, as they say.

As for the decorating... for years Mom would very vocally demand that nothing be touched. Her room looked almost like those hoarders on TV.

In January 2010, Mom had a stay in the hospital. My stepmom and I redid the entire room, top to bottom. It was cleaned out, her bric-a-brac furniture was replaced with the matching bedroom suite I had purchased for my niece when she lived at home.

We knew Mom would raise hell when she came home. I told stepmom to NOT come around for a few days, taking the heat myself. The first thing Mom said was, "I LOVE IT!" She left me speechless...

I lost my soulmate a few years ago. I don't think I could ever live with someone again either. We were not legally allowed to marry, but I consider myself a widower.

[teacake]

Sector 7 your mom's reaction blows me away

So nice to read about.

[SmoothieX]

I've never been a direct caregiver. But I have given care to the caregiver. My grandma went downhill with pancreatic cancer in a hurry when I was in high school. She came to live with us for the last year or so. It was rough on my folks, it was my mom's mom, but my dad worked at home a lot so he had a lot of daily care responsibility as well.

I was 16 or 17, so I had a license and wasn't a kid that couldn't help out. So they would go away for a weekend now and again and I'd be the one doing everything for her.

My old man got sick with gastrointestinal cancer a few years back. I lived several hours away at the time, but I would try to visit once a month or so. I'd cook and clean and run errands for my exhausted mom, and keep him occupied by talking or playing games with him. His mind was shot from a lack of nutrition and hardcore pain meds and any activity with him got to be tedious and repetitive. In lieu of a fancy funeral, he wanted to set up a scholarship fund for someone going into nursing since they cheerfully scrubbed his ass and balls toward the end. My mom was overwhelmed by it, but I just said fuck it, got in touch with some local charities, and now we've awarded one two years straight.

[BORU]

Raising a four and a seven year old granddaughters due to Mother's Bipolar and addiction plus father being a uncaring git of FIVE kids. At 56 it's a challenge that's for sure but I wake up everyday at 4:30 to go to work, making sure all their crap is laid out and packed up for the sitter and school the night before. If I don't work, they don't eat. I give major props to anyone who is a single parent or sole cargiver of anyone regardless of age because it can be stressful.

Here's one thing I'll pass along. Wanna help? Offer that person 1/2 hour, a hour, a day of alone time. Take the kids. sit with grandma, take grandfather for a ride, read a book or watch TV with the bedridden just to give the caregiver a break.

You'd be surprise what even 1/2 hour of downtime can do to recharge the emotional batteries and allow us to continue on.

Still when I come through that door and they are all smiles and hugs it almost makes it worth it, I say almost because five minutes after I'm home one is climbing the walls and the other is plotting the downfall of the known world.

[Tora Ziyal]

^BORU, I like your suggestion. I'll just add to it... If you offer to help, be reliable, and show up on time. When I needed full-time assistance in 2011, I had two wonderful caregivers. But the couple friends who offered to spell them occasionally ended up causing far more stress than they relieved.

Sector 7 wrote:

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The first thing Mom said was, "I LOVE IT!" She left me speechless...

Wow!

[Sector 7]

Tora Ziyal wrote:

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^BORU, I like your suggestion. I'll just add to it... If you offer to help, be reliable, and show up on time. When I needed full-time assistance in 2011, I had two wonderful caregivers. But the couple friends who offered to spell them occasionally ended up causing far more stress than they relieved.

Wow!

Yeah! Imagine that... me speechless!

I hope the links helped someone. Home health has been a Godsend for me. It allows me to go to my own doctor appointments, grocery shopping, etc. Hopefully, my COPD and other health issues will not get any worse for some time to come. Otherwise I may need help for me.

BORU and Tora, long ago I used to drive to visit Mom and get her out of the house for a while. I'd take her to dinner or shopping for a couple hours.

One time, we came back (in Dog Days of Summer/August) and Grandma had turned the HEAT up full blast! After that, I moved in to help Mom take care of her. Later we discovered she'd had Alzheimer's, which explained much of her behavior, once I read up on it. Shortly thereafter she was hospitalized and spent the last 3.5 years on Earth in a very good nursing home.

[Tora Ziyal]

^ Yes, home health is a godsend! I've had visits two-three times a week for over a year and a half now. Without that, I couldn't have been living alone all this time. And, because it's skilled nursing, it's covered by my health insurance, which does not cover personal care (i.e. an aide).

[Sector 7]

Tora Ziyal wrote:

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^ Yes, home health is a godsend! I've had visits two-three times a week for over a year and a half now. Without that, I couldn't have been living alone all this time. And, because it's skilled nursing, it's covered by my health insurance, which does not cover personal care (i.e. an aide).

Mom also has skilled nursing. With CAP Care she gets 49 hours of home health per week (7 hrs X 7 days), plus nurse visits.

[Mr. Laser Beam]

BORU wrote:

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I wake up everyday at 4:30 to go to work

Do you also wake up at...5:31 PM?