New to the forums and need some advise

[sara&peter]

Hello all!
I am new to the forum, just happened to stumble upon it and am so glad that I did. My husband was diagnosed 3/2006 at 33 yrs old, thankfully he has no bulbar symptoms. He has very little use of his arms and hands and his ankles are finally starting to get weaker. Ironically he is dealing with the illness remarkably well and I am the one with all of the issues...thank goodness for anti-deppressants! We try to deal with things one thing at a time, but things really seem to be piling up on me and I find myself getting frustrated very easily. Family members always say to call and they will help out, but I'm not so sure they really understand the daily grind around here. Basically, the advise i'm looking for/hoping to get is.....How do other caregivers deal with the extra load?

Sara

 

[Al]

Hi Sara. I'm a patient or PALS but just wanted to say welcome to our little corner of the net. Sorry you had to come looking for us. You can use the search feature above or sometimes at the bottom of pages there are links to similar topics. I'm sure some people will get back to you shortly but weekends can be quiet here.

AL.

 

[andyvaughn]

Hi Sara,
My husband too has ALS. The demand is high.. I know...at first I tried to be heroic, but as the disease has progressed, (in my husbands case very rapidly) I have found I either have to ask for help, or drown. I can't do it all. I know that it can be frustrating to have people call and say they want to help and then never show up, but I have found they just don't know exactly what we need. I finally have just started telling them. We have people bring by dinner, help paint, made the garage wheelchair accessible, you name it, I have the chore to be done.. HA HA. A group of my girlfriends chipped in and bought me a big dream dinners package, we are all going next week. (You go prepare meals, bring em home and freeze em...) I also have a group of friends that come by and take Jim out a few times a week, that way I can do something for me. Tomorrow I have someone coming for 4 hours, and I am getting my hair cut and a manicure (first in 8 months.. yippee!) Also my brother in law is putting on a big fund raiser for us, my friends have been pulling together for it, we got a local but very popular blues guitarist to play, another friend donated pasta and sauces, another their 3 acre mansion, and yet another let us link into their non profit and make it all tax deductible. People really do want to help... it is just up to us to let them know what we need. My pride sometimes still makes me feel ashamed, for instance a contractor friend just build ramps throughout our house, when he was done I came out with the check book to pay him, he refused our money. I felt ashamed, but he felt so proud to be able to help his friend...I don't want to take that special feeling we all get from helping others away ... so I pretended not to be ashamed of our situation and cried and thanked him from the bottom of my heart.
Anyway, the general point is I think people really want to help... you may have to act like the sargent, and direct them, but they get joy out of helping, and you will save your sanity.
Andrea - wife of Pals Jim

 

[Peg B]

Hi Sara,

I am so sorry you have to be here, but I think you will get lots of helpful ideas. I agree with everything Andy said, people want to help, but they don't always know how. They are sometimes afraid of interfering also. You are in a different position as a spouse, but there are some concrete steps that you might find helpful.

To help my mom and later our sister (cancer in both their cases) we made lists of what needed to be done and then when people called we had jobs ready to request of them. We made weekly/monthly calendars and people signed up according to their time, talent, and interests. For instanc, I set a medicine schedule for my sister and set the medicines up every week. I took care of my mom's medical needs, but my sister took care of her home care needs. We all took turns taking her out.

Make a lists of concrete tasks including all the kinds of things that Andy listed (time for you, the house, direct care for your husband) you can help others know how to assist you and with the calendar you can plan what will happen when and give yourself some sense of control. Make sure you gets lots of support for taking care of yourself too. God Bless you. I hope this helps. Sincerely, Peg