Spending Time together

[MrsClose1]

Hello, my husband was diagnosed with PBP in January 2011. He started losing his voice in September 2010. Our first visit to the neurologist he told my husband he had a stroke by our third visit. I could tell by the Dr. demeanor that something else was terribly wrong. He sent us to the ALS Clinic to a Dr who specialized in this disease. My husband is a strong man his arms and legs were perfectly fine. The only thing that he had complained about over the course of 5 years were his knees and lots of extreme cramping all over his body especially the legs and back muscles. Here we are now June 2011 and my husband speech is no longer, his legs are starting to weaken, he needs a peg eating & taking meds is taking a toll. My question to you is. I would like to take some time off from work to spend with him while he is still able to walk. I am just afraid that when I go back to work this will depress him more or should I just wait till he really needs me at home. So confused.

 

[Al]

Hi Mrs. Close. Welcome but sorry about your husband. Hope you don't mind but I moved you up here in hopes of getting you more answers. PBP forum doesn't get as much traffic.

AL.

 

[10steps]

Its a tricky decision since there's obviously financial needs and medical benefits and on and on...

Take the time off, enjoy doing those mobile things you love to do together. I worked, used vacation time and we did a couple family trips. Best decision.

 

[brooksea]

Hello and sorry about your husband. You say he has difficulties with his legs now. Has he been to the ALS Clinic lately? He needs a new eval.

I would like to take some time off from work to spend with him while he is still able to walk. I am just afraid that when I go back to work this will depress him more or should I just wait till he really needs me at home. So confused.

I would do what ever y'all can now. How could he not be depressed later on?

 

[Miss]

If it were up to me, I would keep working, pay for caregivers when the time comes and take vacation time to spend with your husband. Work will become your safe haven in the days to come. I can tell you from experience, 24/7 caregiving is taxing for the caregiver and the patient. It becomes the dominant relationship and overtakes the marriage. I would love to be able to hire people to care for my husband so that I could spend quality time with him instead of time tending to his every need. Just be sure you budget for sleep time.

 

[smwelder]

do what you and he can do now, things change really fast sometimes and the chance to do things is lost.

 

[MrsClose1]

Thank you everyone for your response. Thanks Al for putting me in the correct spot. We do have an ALS clinic Appt coming up on July 8th. I definately believe the Dr. will re-evaluate him. His progression since our last appt has been very rapid. He is having a very bad day today he is very depressed and he keeps telling me his body is telling is giving out on him. I try to console hime but can not find the words to help him.:sad:

 

[abbigaill2]

Welcome MrsClose1
Post diagnosis I continued to work for a short time. It gave my husband some independence for a short time until he could no longer walk. I used vacation time, then here in Canada unemployment insurance covered the next 6 weeks. It was called Compassionate care leave. I am not sure if you have that in the states. I do not regret spending the time my husband had left at home with him. It is hard to give you advice not knowing your circumstances. I wish you both well and hope you find the answers you need.

 

[jwife]

Sorry to hear about your husband. My husband was diagnosed 2 years ago and is now confined to his power chair or the bed. He needs assistance with all his daily skills, is unable to assist with transfers and is being fed using a G-tube.
This is a tough question and no one can answer but you and your husband. There are benefits to both. Taking time now may give you a chance to make some strong memories to help you through the tough days to come. Waiting and being able to be there when his needs are more significant can also be important. I can only tell you what has happened to me and hope that it will give you some insight. I tried to continue to work after his diagnosis, but ended up taking early retirement from a job I dearly loved. I found that I could not take worrying about him while I was at work. I didn't think I could afford to pay for help during the day and really felt that it was my responsibility to be at home with him. Now a year and a half later, I think that might have been a mistake. I would love to have my job back. I miss my work because it was a large part of my life and part of the definition of who I was. It would provide a break in the care taking. The roles in your marriage will change significantly. That is part of the emotional roller coaster that is ALS. I know that I would not be happy working and worrying about what was happening at home. There are so many factors to consider. In the end, I think you have to weigh the options and make your own decisions. The best of luck to you. This forum is certainly a place to go for getting honest and heartfelt information.
Janis

 

[jazzyfan001]

I don't know where you live but in Portland, OR at Providence health care and contact Dr. Kim Goslin. She is wonderful.