New and tired

[CaymanIslands2009]

New here

My husband of 21 yrs was dx Oct 2015. He had symptoms in 2014 and started stumbling and falling in 2015. By Nov 2015, he could no longer dress, feed, or drive. I had to pack and sort our home and put it up for sale, so we could move closer to ALS Clinic. He is now on hospice and youngest son deployed 2 weeks ago.

I was only one caring for husband until hospice help. I haven't left his side because I don't want to miss time he has with me. I know I need to get out of home as he progresses, but I struggle with guilt for leaving him.

He is hardly eating or taking fluids now. Just at a loss for what has happened..he was 44 at dx and sons raised..thought we would travel and spend time together...such is life.

 

[lgelb]

Cayman, so sorry to hear about your husband's progression in conjunction with your son's deployment, and you don't have to go anywhere you don't want to, but feel no guilt if you do. We say that you shouldn't try to push past what you can handle. That point is different for all. Ask anything or vent here any time.

Best,
Laurie

 

[scaredwifetx]

Cayman, I am so sorry. I feel the pain in your word's. Having a son deploy makes it even harder. I understand you wanting to spend every moment with your husband at this point.

If you feel the need for a break...why not trying to get away for small breaks while hospice is there. Even small amounts of time could be beneficial if you feel closed in. If you want to be there at all times maybe a bath and some time talking to us can help.

This is so very hard. I planned on sending our future traveling and spending time alone. That's no longer in the cards. Hugs!

 

[Nuts]

Cayman, I am so sorry. We here understand the pain and unsaid things behind your words.

As Laurie said, you do what is right for you and let go of the guilt. Time away, or at lease relieved of caretaking duties, can help preserve your own health, which is vitally important, but you don't have to give up long stretches of time with your husband in order to achieve that.

You have already moved mountains. Please let hospice make things physically easier on you.

Big hugs. Please visit us often. It helps

Becky

 

[soonerwife]

So sorry to hear of your dear husbands dx.

My husband is the same. Dx'd 10-2015, symptoms started in 2014.

We understand completely how horrible this is.

Glad you finally found this forum. It is wonderful. Feel free to vent or ask questions or whatever you need.

 

[sweetmozart]

Deb,

I know what you mean. Isn't it funny how you start envisioning a future, before ALS hits, then you realize that what you thought were plans were just dreams that can't come true? It is difficult to adjust to reality. My husband was diagnosed when he was 39, now we are in our mid fifties. Our youth, his career, so many things went by the wayside. Luckily we still have lots of blessings to be thankful for, family, each other.

I, like you, have been my husband's only caregiver. It is difficult, getting more difficult daily. For me, I've been able to leave him to work and just get out sometimes. I hope you will feel okay about getting out now that you have some help. It sounds like you have taken good care of your husband. You can be proud. I wish you strength as you continue down this unfortunate path.