How can I help caregiver??
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February 28, 2007 at 1:18 am
Hi,
I’m new here, and am here as a friend trying to learn as much as I can. I’ve been reading as a guest for a while, and just registered because I need to know what I can do to help a situation where my friend is becoming very resentful of her son and all the care he needs. I hope someone can help me know what to do.
Her son is 23 years old. He was dx 1 year ago, just a couple months after his mom’s final chemo treatment. He left the hospital about 6 months ago, and at this point only has limited use of his arms – very limited use of hands. He obviously requires much care, and she was short changed on her recovery time.
The family – Mom, Dad, and 4 other children, (the youngest is 9) – is ready to crack. I feel helpless! What can I do???
Today I told him that GBS stands for Getting Better Slowly – he liked that one.
On the more humorous side, we’ve thought of many more “GBS’s” that apply to him – and maybe you’ll relate, too.
Got Broken, Somehow
Grouchy Bear Sometimes – but not very often! He’s incredibly patient!!
Gracious Brother / Son
Gradually Beating Symptoms
Gorgeous Bright Smile
Greatful Brave Soul
Gentle But Scruffy (so says my daughter)
Gimme-a Break, Sweetheart
Giant Boy Syndrome – he’s 6’10”
Great Big Shoes – size 16Enough for now. I do look forward to hearing from any and all. I also have a great admiration for both the afflicted and their caretakers!!!
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February 28, 2007 at 9:10 am
First, you obviously are a good friend to go the extra mile to find help for them.
I don’t know the medical assistance you can get for the son, as I didn’t need it due to my wife and sons. (although I did have visiting nurses for meds, PT and OT.) I do know they have day visiting nurses that might be of assistance. You didn’t say the age of the son, so I’m not sure what agencies might be of assistance. However, I will let more competent people on this forum address that.
However, the mom needs assistance as well to meet her needs. My advice for that is to help her (through you and enlisting other family and friends so you don’t burn out) by providing meals, cleaning her house, listening to her (sometimes without responding much at all! 🙂 ), letting her go out on her own while you tend to her son, go shopping for her, taking her out on an all-girls night out and any thing else that helps her day-to-day routine go more smoothly. I’m sure you cannot do this daily; however, if you and friends can manage at least a couple times a week, that might help. I am sure she is totally stressed out, feeling alone to some degree and is relieving the stress in any manner she can. I know my wife needed time away from me from time to time. The things I listed were a great help to her as she had to live my diagnosis as well. And even though it sounds like she has recovered, it doesn’t do her health any good to be overstressed and tired herself.
Hope this helps??
Best of luck!
Dennis
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February 28, 2007 at 11:10 am
I just love the other names you have given for GBS! What a wonderful idea to have a good laugh.
Here is a thread that may be a little informative, just some information that some people wanted to get out there, some posts waffle a little, but many are interesting. Just copy and paste.
[quote]gbs-cidp.org/forums/showthread.php?t=38&highlight=Things+knew[/quote]
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February 28, 2007 at 2:08 pm
My advice would be to ALWAYS TRY TO SEE BOTH SIDES so that no-one says your friend doesn’t do enough or son asks for too much. I have CIDP, the chronic stage of GBS and I am waiting to find out if I may also have a second chronic syndrome, so I can understand what “son” goes through. I know his frustration when he tries to do things and his fatigue. I live with my mother and I am also a CAREGIVER to my mother who is close to being bedridden now. So I am feeling things from both sides. Trying to care for her literally drains me, but I would do it even if I had to crawl to her (which I did one time when I fell). I know your friends helplessness and how tired she must be from her own battle. SON needs someone to help him and so does your friend, then they can help each other. They both also need their “QUIET” time, I know I do.
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March 1, 2007 at 10:38 pm
Love the post, Friend! The part about the other names for GBS at least! That’s very cute! Good luck with your friend! I hope her son gets better really soon! He sounds like a sweetie!
Shannon
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March 2, 2007 at 12:35 pm
General Suggestion
How about asking the mom and the rest of the family what would help and sending a note out to friends and the parents at the school the younger kids attend? Do they attend a church or club or sports team? These members are also great places to find friendly help.
I’m a mom with GBS and my family didn’t know how to get help for themselves much less for me. It’s really hard to learn that you can’t do it all and you do need to ask for help or you will crack.
For example, we sent a note out to the school community asking for help with:
meals (we had to specify no garlic or onions because they make my husband sick),
scheduled time with me so the others could get out of the house,
play dates for the kids,
help shopping or running errands, (like mailing the netflix back)
help getting me to appointmentsTake care,
Claire -
March 2, 2007 at 5:14 pm
I really appreciate the responses. I have learned that as a human race, we are pretty good at “sprints”, and seem to be of much assistance during them. But when it comes to “marathons”, not too many stick around.
Having said that, my friend does have a few good “marathoners” and several “sprinters”. Together, we should be able help each other not to burn out, right? Sprinters can certainly offer some much needed relief at precisely the right moment. She is involved at Church and has some great support from there.
My daughter dated Jacob pre-gbs, had stopped dating him, and has now fallen in love with him. She is an unstoppable, loveable marathoner. Last night we discussed – again – what she was doing FOR HERSELF, so she doesn’t burn out. She is over there every night, to brush his teeth, read scriptures, and whatever else he needs done to get ready for bed. He has her “frog his leg” so he can use his arm to flop his leg over, thus causing his body to roll over – then he doesn’t need to call his parents in during the night.
They are really cute together. She can actually look him in the eye when he’s in his wheelchair: he sits 5’4″ and she stands 5’6″. 😎
Thanks again for suggestions – I’m open to many more. And especially input on how blunt I ought to be with them about taking time out for the family to do things together. Maybe even family counseling? :confused: I love this family and want to see them pull through together.
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March 2, 2007 at 11:58 pm
God bless your daughter, what an angel she is for this family. Looking back, I still don’t know how my husband managed to do all that he did when I was at my worst. He was working full-time, running down to the Mayo every weekend to be with me, dealing with the insurance company, etc. & still taking care of all that I had done at home previously.
It only got worse after I got home as I needed total care. He took 3 months off of work under FMLA, & when that ran out my mother had to move in with us for 9 months. She did help with the cooking & taking care of me during the day, but she was 78, so he was still doing all of the grocery shopping, running errands, cleaning, laundry, bathing me, running me to numerous doctor appt, paying bills, it was endless. Finally we got a cleaning woman, & that helped.
Anything one can do to help is so appreciated. I wish someone would have offered to go grocery shopping for us, or to come over & clean a bathroom once, run a vacuum, take me to a doctor appt. We really should have asked more for help, as he was definitely on overload. One doesn’t realize how much a mother does until she is taken out of the picture; now add her as a person needing total care. I really feel for this family, they need all of the support they can get, & should accept it…
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