new member

[C.F.]

Hi! I have just found this forum, and am so happy to be able to be in touch with you.
I have a dear friend with ALS, and have started getting deeply involved with him. He lives with and is cared for by his Mother. I am seriously considering, and have already offered to his Mom, having him live with me. I have the desire to try to give him the best life I could. Not that he doesn't have good care now. He has a loving family that look after him. But that's not the same as having a loving companion to see him through......I know it will be difficult in many ways. I could use all the advice and input anyone has to offer. Thank you, CF

 

[swmn]

CALS all kinds

HI - welcome to the forum - I,too, have a dear PALS friend who I love like a brother-
{actually - closer than any of my real sib.s}. He is also a colleague - I understand how you feel- and I cant tell you how happy I am to have you here - you will learn so much from all these wonderful people - there are a lot of great threads. It is such a relief to have these experienced, caring people guide you as you try to help.
I'm sure you will hear from Irma very soon - she will have a lot of wisdom to share with you, having lost her son to ALS. . I look forward to sharing with you too - every day is a new challenge - happily accepted to make others' days a little bit better..

 

[CathyAmanda]

Another Friend

Hi C.F and swmn,

I am sorry to hear that there are another 2 ppl out there watching friends suffer this cruel disease. However i am glad that I found this thread. My friend Julee has been diagnosed with ALS for a month now. We have been friends for about 16 years. She is 36 and I am 32. Sadly we lost her brother Garry aged 33 on Valentines day this year to ALS also.

C.F. you dont say how old your friend is or how old his parents are. I understand that you want to help but this may be something that his family need to do for themselves also. It is hard as friends we love just as much as family sometimes more however we must somehow know how to offer only the right amount of care and help without taking away from what a family needs to do to be at peace with what they have done. If that makes any sense at all

Take care I am sure you will know what is right for your situation. Remember dont take offence if you are not "needed" as much as you would like to be and do what you can when you can. With all the high emotions of this disease what they may not want help with at the moment they may need next week.

 

[vikings70]

New member

I have just joined this forum. My husband of almost 25 years has been diagnosed for almost 5 years now. He is only 46 and I am 45. I am too young to feel so old. I finally have some help with him but do most of the caregiving myself. It is not a fun job.

 

[nspoc]

Hi C.F. -

I and my husband take care of my best friend with ALS. She has lived with us for 3 years, now - The difference is that she has no family, we are her family.

Is there a reason you would like to have your friend move in with you? Is the family elderly?

Right now my friend cannot be left alone - she has a risk of choking. We plan to use a ventilator when the time comes - now we are on 24 hou rbipap.

We have ceiling lifts and other good equipment to help. I do not work and am able to devote myself full-time to this, yet we still have caregivers so I can get out and shop, etc.

I would do this again in a heart beat - it is not as difficult as I feared. She is physically helpless, but can speak and eat. Together the three of us have a good life. But we had always planned on spending our retirement together.

Your plan is doable - but more complicated than our plan, because there is a family.

Maybe you could talk to the social workers at an ALS clinic to work out any forseeable issues. We talk to the home care team at our clinic all the time and they are wonderful.

Please keep asking lots of questions here - people have great insights.

I would always be happy to help with any resources or ideas you might need. The road ahead has a huge number of decisions, and the need for lots of equipment. You will need to be very proactive in looking into the future and deciding together how to meet your friend's emerging needs.

Good luck and keep in touch - Beth

 

[CindyM]

The job of 24 hour care 7 days a week can be tough. A lot of the time the needs wear a solitary caregiver down. But your friend is lucky in that he has family and a friend willing to step up to the job. Seems like the best solution for all is to share the duties. I am sure Mom and Dad will apreciate having weekends free, and if you guys divide up the care hoours, neither of you will get worn down as quickly. JMO. Cindy

 

[Gina]

Hi vikings,I know what you mean about feeling old my husband has been fighting this horrible disease for four years now and i feel like i have aged 20 in that time!My husband is 60...i am three years younger.Welcome to this forum you will find so many helpfull people here!....p.s sorry that you have to be here though.....but it is a great forum.....Gina ............... Also welcome all you new members who are stepping up to the plate!