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over 2 years ago
Missy said...

I don't know that I've had a defining moment yet, but it has, most certainly, occurred to me that I am the only one of my social circles in a caregiving role. Everyone means well in their inquiries about how well Mom is doing or how I'm holding up, but none have ever had to deal with the emotional ups and downs of not knowing what the next medical intervention will bring. Or worse, wondering what the end will be like. None of them have lost a parent. Thankfully I don't feel isolated. I just feel...I'm not sure. Time to find a caregiver support group, I suppose. I will tell you, though, I wholeheartedly I someday have the pleasure of shopping with my mom and my tweenage (and beyond) daughter.

over 2 years ago
LindaSD said...

I mentally plan packing my bags and running to a far away country where no one can find me - more lately when my 89yr old mother, who has Alzheimers yells at me, threatens me, throws things at me and yells that she wants me out of her house. She cannot live alone and if I left her, she would be in a nuring home. I cannot move out (I own half the house) since quitting my job to take care of her as she has declined, I cannot afford to live outside the house and still take care of her. I am as dependent on her as she on me.

I have been her sole caregiver for 10 years and 5 years prior to that it was her and my father prior to his death, who also had Alzheimer's.

Most days I can deal. But as her anger escallates, I can't. She refuses to do anything I try to get her to do (shower, eat, medication, etc) and gets her face in such a contorted, angry out of control look trying to hit me when all I did was ask her to change her incontenint pad. I walk away but it leaves me wondering constantly if I should just put her into a nursing home.

Defining moment -I'm good at being a caregiver. I have good training, I understand the disease, I do this well - most of the time. I feel proud to take care of my parents. But at the same time I'm tired of not having my life and dealing her with anger and abuse on a daily basis. Everyone that knows me thinks it is such a wonderful thing that I do and are very helpful and supportive. But they aren't doing this. If you read most of the posts on this and other sites, you see quickly how it may look easy or start that way, but would top the list of the hardest thing anyone has ever done.

over 2 years ago
Carol O'Dell said...

I used to fantasize about leaving my mother at the hospital ER (like a newborn gets dropped off at the fire station)and I'd drive to Key West, change my name to "Flo" and become a salty waitress who watches the sun set with a couple of beers at the end of each day. The fantasies gave me a mental escape valve so I could show up each day and do it all again.
My mom had Alzheimer's as well, and she could give me the meanest, scariest look and be quite "wild" at times. I tried everything--meds, distraction, you name it. Some days are just tough and you have to dig really deep to keep your cool and do what's right (even when things are being hurled at you!) Thanks for posting. I think it helps to have a place to vent--and share. ~Carol O'Dell

over 2 years ago
Carol O'Dell said...

Hi Missy, I'm glad you posted. It's hard when you're the first one of your peers to experience something--you have to kind of forge the way. But I've also found that those same friends forge the way for me. One of my dear friends got breast cancer last year. We cried, went through surgery, rode to chemo and celebrated her one year mark--as friends. She taught me about the disease, and I found that I worked through some of my fears by being at her side.

Online "buddies" can really help. You can vent, compare notes, ask what to do/where to turn--and sometimes be more honest and open about where you are than with someone who's closer to your situation. I hope you and your mom have many "shopping" years to come. ~Carol O'Dell

over 2 years ago
LindaSD said...

Carol - thanks for a good laugh -you are right, once I got some hours past that bad part, I was thinking maybe my imaginary trip to Mexico would be a bad escape since I don't know any Spanish. South Florida with some beer on the beach sounds better. The concept of dropping mom off at the ER is rather interesting, and funny -very visual image that still has me smiling.

You are right - a safe place to vent without anyone thinking you too are losing your mind is saving me. And I don't alway need advice, just understanding of how crazy I feel at time. Thanks. Linda

over 2 years ago
NannyQuacker said...

where I live some of the nursing/assisted living homes have weekend care to give the care givers a rest and time to recharge and I know for a fact that medicare pays,my dad and I have used it. I also have a friend that has a home health sitter come in for every other weekend even if she doesn't go any place it is another voice in the home and someone to take up some of the stress,medicare also pays for this. They consider these intervention care .

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over 2 years ago

Hey Flo...Calgon take me away, is what always comes to my mind when i'm stressing.

over 2 years ago
Carol O'Dell said...

Ha! It took me a minute to realize I'm Flo!

My other fantasy was to invent a giant adult playpen--a really nice one with a play purse, a dolly, one of those non-breakable mirros, a blankie and maybe a recliner for my mom--it would sit in the middle of my livingroom--so I could get stuff done!

Hey, nobody thinks you're a bad mom if you put your child in a playpen:) Think they'll put me on QVC? I told my mom about it--she said she wanted lots of purses--and her beads. I'm glad that before her Alzheimer's got too bad that we could still kid with each other. ~Carol

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over 2 years ago

Hi carl,

I have two sisters and one brother. And eventhough I have a seven year old daughter in first grade. We both help my mom and dad who I take care of. Sometimes it's alot of strees since my other family don't have time to help. My broter and sister told me not to have any more kids cause i'm just putting on them. But I do my best with all of them even if my mom is in the hospital know. Somtime I wish i was dating or married and not doing this. I even want to scream as loud as I can. Than I remember everthing they done for me and it makes me know what i'm doing is right.

It is so releaf to get this off my chest to some one who can relate to what i'm going through. Instead of hearing all the bad things i do from my family. There is one thing they know is that i would never put them in a nursing home and that me and my daughter are allway there for them. I make sure I pay for all the bills and do the shoping,pick-up medication,take them to the doctors that they need to see and make sure they take there medication on time too. My daughter is smart at school and see keeps a good eye on them to.

Even though I have homhealth aide,nurings,and therpy for my mom who is only 59 and my father who is 67 years old, they like it when I'm there with them when the people come. Since i'm the only one who can read and sign for her. My father gets into his own little worlds so i have to keep him busy and out of my mother hair. Since they haven't done it for a very,vey,very long time.

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over 2 years ago

How did you find out about caregiving weekenders or helpers paid by Medicare?? I never heard of that.....if its true everywhere it would certainly be nice to know.

over 2 years ago
Carol O'Dell said...

Caring for our chidlren--and our parents--is really a challenge. I learned the hard way to "never say never." My mother had a fear of "old folk's homes" as she called them. She made me promise all my life to never put her in "one of those home." But as my mom's Alzheimer's grew worse--I knew that there might come a time when it would be necessary--especially for the safety and mental health of my children. All we can do is the best we can do. We don't know where life will take us--or what it will ask of us. I hope you and your daughter and paents have many (mostly) happy years together. There is a deep sense of belonging that comes with caring for those we love. It may not feel cool all the time, but it is. ~Carol

over 2 years ago
NannyQuacker said...

Ask the doctor to write a script for in home assistance for the type needed ask them to recommend an in home health care service or you can leave it to medicare, we had Amdysis and they are with my dad now that he is back with my step mom,they have offices all over the southeast and if not close to you then they will recommend a sister company. It all depends on the way you deal with the issue,you must be willing to talk and give them the information they need to care for your parent. I pray this has helped.

over 2 years ago
LindaSD said...

For what Medicare covers, you can go to their website, to the Caregiver area, the following also will take you there. There is a downloadable .pdf file that details the coverage and who is eligible. http://www.medicare.gov/LongTermCare/Static/HomeCare.asp

I live with and am caregiver to my mom. Wwhen I got the flu, gave it to her so we were both so sick I couldn't take care of her, I called our family doctor who approved skilled nursing care in our home for my mom. He called an approved agency who then called us and came to the house. I didn't qualify since I'm not on Medicare but it got mom taken care of (nurse visit, aide who showered her, etc) so she wouldn't get worse while I took care of myself.

Call your doctor and discuss.

over 2 years ago
sherancares said...

What area do you live in? I am in los Angeles, and there are some programs that cover respit care... not covered by medicare that I know of... perhaps I can help locate something in your area for you.

Sherancares. Los Angeles/

over 2 years ago
sherancares said...

I ran closed dementia units for 7 years, and hopefully readers can appreciate the baby dolls and rocking chairs. In some of the later stages of Alzheimer's it is a tender experience.

over 2 years ago
sherancares said...

What area do you live in? I am in los Angeles, and there are some programs that cover respit care... not covered by medicare that I know of... perhaps I can help locate something in your area for you.

Sherancares. Los Angeles/

over 2 years ago
NannyQuacker said...

I have recently found out about a senior day center that a neighbor has told me about. I live in Louisiana .the YMCA has a day care for seniors that need help with meds.and getting meals also need time daily with friends,they even in some areas can go around to pick them up.My neighbor is 79 and he goes three times a week to socialize and be with others of his generation.He said the care for some is much more but,he even has a friend that goes and stays at an assisted living home a few weeks every few months to give his son and daughter in law a break, he told me that he asked medicare about this and they consider it preventative care.

about 2 years ago
ToulW said...

I think everyone involved in caregiving feels like running away at some point. You wouldn't be normal if you didn't. Caregivers have to be good at "keeping the main thin, the main thing." In order to do that, there has to be some rest and time involved in activities that are just for them. Nobody has the reserves to "be on" 100% of the time.

about 2 years ago
NannyQuacker said...

A friend used the weekend and the day care during high stress times and my info. also comes from asking question of the medicare people.

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