Caregivers Support Group

I know how you feel, Gwen. I've gone through that with my late husband for 3 and a half years. He was stubborn to co-operate, and made my life extremely difficult. Meanwhile I also had to take care of my Down Syndrome daughter, Colleen. After my husband died, 5 years ago, Colleen started to deteriorate. So I'm still a 24/7 caregiver, stuck at home permanently, and forgotten by the whole world.

Unfortunately I don't have any answers for you. But taking life just one day at a time, helps me cope. I also created my own world inside my home, by doing things I enjoy (writing, fabric painting, listening to music, etc). And I decided that it is my choice to be a caregiver, to the best of my ability. It is only human to get depressed, angry, feel hopeless, etc. Just remember, nothing stays the same forever! At some point things will change again, even if it feels like half a lifetime! You are an amazingly brave person, because you took up your huge life challenge, and care for your husband with your whole heart! I'll be praying for you, my friend!

I wish I had the magic answers to give you. Could your husband be depressed? Was the therapy working? What does his doctor say? Do you think your husband would go to counseling? As a caregiver you need to take care of yourself first. Is there a way to can get some relief every day? I go to an exercise class every day and that is my escape from caregiving and a way that I keep myself physically strong. I know it is a way, too, for me to socialize. Does or can someone come in to help every day? We have to take things one day at a time and, yes, make our own happiness.

Thank you Andelene, I sent you a hug. I'm always moved by my fellow DS caregivers who respond when others need support.

2cat, We are already friends and once again you are there for me, know it means so much to have your support and friendship. Sent you a hug as well.

Hugs galore and love, Patricia :-)

Certainly something we all deal with as full time caregivers. I have said it's like being in a prison that we sort of "chose" to be in. We do have "outs" but not really because it can be the best case to keep our loved ones at home no matter how draining... but boy is it draining.

My son can do nothing for himself and so I am caring for him 24/7 and getting reliable aids is a nightmare! I get frustrated because I even have to find my own inspiration to go on most time! lol...

I am still trying to learn how to survive inside my apartment.. I have a treadmill and can usually find or pay sitters a few times a month so I can do races... not always easy but I press on.. this week I ordered a punching bag since I cannot afford an injury and running is how I get rid of my tension - I needed another way to release tension so I actually ordered a punching bag to help... sounds crazy but I believe I can take my frustrations out on it instead of the few people who finally decide to help me!

I fear it will be like this the rest of my life too as I am soon to be 52 and my son is just 28. My goal is really to get him as independent as possible so someone will have an easier time taking care of him when I die...

I try to make my apartment the best environment I can since all of my existence is inside here and I can choose my own actions here...even though I can't make my son better....I can choose for me even from here.. sort of like giving myself some "power' in the situation... trying to find new things to enjoy -- I used to like racquetball and hiking.. not possible now...

For me it's like trying to figure out how to function here...it's so difficult... but I'm getting better at it.. one step at a time...one day at a time..

This is a great site for comfort, encouragement and to vent our emotions! It's a safe place!!

Hi Gwen, I was a sole caregiver for my mom for 18yrs.

The last 7 of those yrs my mom went to an Adult Day Care. Mom was severely disabled in a wheelchair. When she 1st started goin, she was able to get out of chair with assistance to go to the bath rm. They sent a handicapped bus to pick her up & drop her off 3x/week; 2 Sat's a mon. Only thing mom was on T-19

It eventually got to the point where theropy wasn't helping. She had bouts with depression but between myself & her aids, we movitated her to try more,,,"Use them or loose them" (her legs). Mom was also battling heart failure which eventually cause her to lose the strength she needed to get out of chair (heart wasn't pumping enough blood to all areas of the body) How severe is his handicap? He able to get into a car, go for rides, dr's, movies, out to eat,,,,?

My depression really kicked in when she became a hoyer & couldn't do any of those things except go to ADC. What got me thru it was prayer & a faith in a power greater than myself. Begin saying the Serenity prayer & this one. "Lord, I need YOUR help even to see the needs of the people around me and then to know how to care for them. Give me a heart of Compassion like YOURS and the oppertunities to express YOUR love. How can I best serve THEE - THY will (not mine) be done. Amen!

You might want to look into resprate care for yourself. Someone you can trust with husband so you can get out to the things you like again. Research services that provide resprate care ( if you can aford it) .

Any other question's you may have, contact me. May God bless you & those around you always, take care! Johne

Hi

Instead of him looking out the window,,,can you push him for a walk.? At least going for a walk will benefit you, get you out of the house, maybe talk to some neighbours.

I'm glad I had the knowledge of what caregivers go thru before I got sick. I care that my daughters do things for themselves, without having to worry about me. When I couldn't get out of bed by myself, my daughter would come in, said, let's go, I'll help you up, ,,fed me and left. Once I was up I was fine sitting or with a walker or a wc. She pushes me as I do to her when she is not feeling well. If she goes out, I tell her things I've done, if I did Nothing,,,she tells me what I could have done. We dont fight, scream or get mad at each other, but we listen and comply. That's one thing I've noticed when someone gets sick, they expect to be taken care of meanwhile making no effort,,like if the caregiver didn't matter. That's what has gotten me out of wc and bed, knowing that.

When my daughter wasn't well ,I was still working, I got her everything she was going to need during the day and checked her by texting her. If I hadn't done it like that, I'm pretty sure things would or could be different today.

Having a loving but firm conversation with our love ones might get some action from their part. My oldest daughter, comes in, says we are going X place, I refuse, she replies, I'm not asking. They make me push myself everyday.

I'm thankful for that.

Hope things get easier, Alma