For health care specialists or those with first hand knowledge only. Hubby has Multiple Myeloma.?

Question

My husband has a severe form of multiple myeloma. He is only 39 years old. I have been trying hard to try to cope with his illness but with all of my other responsibilities(kids, work, school, home, bills etc) I find it difficult to be there for him the way he wants me to. I cook for him and take him to his appointments, I wash and bathe him as well and change his bandages. Those things do not bother me. We have to wait until his medical insurance kicks in to get home health care. Until then, the thing that bothers me most is every time I try to get started on another task he is calling me to do something else for him (get him water, help him to the bathroom, fix him a snack, find the remote) the list goes on and on. He was given a four way walker and a cane but he would rather lean on a person than try to use those tools to help himself. What advice do you have?

I should also add that he can get around with help from a person or the devices that were prescribed by his doctor like the four way walker and cane, but it does drain him to use those muscles.

Thanks Jewell, and hang in there. He is currently taking the Thalimide. You give us hope that he can get better soon. He was just diagnosed back in Feb and we have been on an up and down roller coaster with our marraige ever since but we are hanging in there.

Answer 1

Hi,

Sorry to hear about the MM; it broke up my marriage so hopefully the same will not happen to you.

I am a little shocked he is so far along at 39; "usuallly" we "young people with MM " have lower progression.

What is his outlook - SCT ? Thal/Dex or Velcade? Treatment should lower cell loading and he should get stronger.

"both" of you could use some counsuling - to help get over the hard parts. the mental game is REALLY hard; so depression is there someplace; to go from "alive and healthy" to "terminal cancer" is a really tough one to swollow. Many people have told me "they understand" but truthfully, unless the doc give YOU that kind of news, you really don't. All you can do is work together to make it better till he gets better; hopefully he will.

You really need to sit down and discuss what is going on; that you, as "primary support person" have a lot on the plate and that, while you understand, you need him to help as much as possible. HE needs to be patient and work with oyou; make him part of the support, not just the person needing support.

Part of the weekness is (probably) low HGB and the meds - see what you can do to keep him strong. Docs should be albe to help and see if you can get some friends / relatives to give you a break; even for a couple of hours a week. You can't be superwomen forever; ask for some help.

Als, let him know, he NEEDS to keep up the strength as much as possible, for as long as possible.

There is a lot of help on the MM sites, even stuff for the caregivers.

http://www.multiplemyeloma.org/
http://www.myeloma.org/main.jsp

good luck,

Jewells
28 months and still here

Answer 2

Sorry to hear that he is sick, but I will emotionally drain you along with him. Sounds as if he is feeling sorry for himself. Yes, he is capable of doing small things for himself, but at the same time it is draining him physically. But he has to realize he must do something on his own if it is not to painful, or detrimental to his health. He must try and keep his muscles in shape. Sit down and have a long talk with him, get him to understand that you are there for him no matter what, but you also need some help from him and support from him. Try making everything convience and at reach for him like the remote control or a potty chair next to the bed, that way he can stand and pivot. Good luck to the both of you.

Answer 3

His condition can be painful, but give him pain medication with breakfast and give him a routine for the day. Keep him moving unless the doctor specifically tells him otherwise. If you don't use it you loose it. I'm sure you have heard this before. When he walks even a little , he continues to maintain better bone and muscle strength. Walk to brush your teeth and get cleaned up. Walk to the bathroom at 10am. Walk to the table to eat at noon...It will give you both some structure. It will give him a
schedule, expectations, goal achievement, some self empowerment with his illness. Whenever you can, listen to music, enjoy the outdoors, fresh air and sunshine. Take time for you at the end of each day, to unwind, relax, breathe, connect to your higher spirit and be thankful for the day. This will help you sleep and you will refresh your soul.

Answer 4

I'm sorry to hear that. All my best.

I would suggest you two see a therapist together, one who specializes in this area.