Significant decline

JulieB46

In the last week my DH has gone from being continent to needing depends every night and peeing on the floor 3 of the last 6 nights.  He also went from me laying out clothes,to me helping him put them on. I also have to tell him to shower and make him get in the shower.  He also is having difficulties using utensils when eating, I cut his food and got him plates with straight sides.  He had a senior companion coming for 4 hours 2 days a week and I’m taking him to daycare 3 days a week.  He is 66 and EOA.  I have taken him to urgent care to rule out a UTI.  It was negative. I’m 58 and still working.  I love my job and need the respite.  I also will need my income if I need to place him.  I can’t retire for that reason as well. I called the doctor’s office last week and left a message about the rapid decline and asked what I should be doing.  I got a call back 2 days later asking if I’m afraid of him hurting me or if he is wandering.  When I said no to both, they basically said this is what to expect and they’ll call weekly to check in on me.  I feel like he has moved to stage 6 in the last 2 months. Finally, we have been married for 23 years and together for 25.  The adult steps, say they support my decisions, but they aren’t calling or visiting and I fully expect them to question my decisions.  I have sent out emails to MCs in our area, but havens haven’t heard back. I’m sad and exhausted.

Joydean

Julie, I’m so sorry your DH is progressing so rapidly. I have to lay out clothes for my DH and help him get them on. His socks and shoes. I also have to shave him, cut his nails and toe nails. So far he has only had a few accidents with pee. I have to cut his food or do finger foods. It is a very sad thing to do all the basic things for a grown man. Sometimes I look at this man that mostly looks the same as always and yet can’t do these things for hisself. My partner for so many years. But that’s what this disease does. 

I understand your being sad and exhausted and full time job. Take care of yourself too!  

jmlarue

I feel so badly for you - for all of us - when when our loved one declines so rapidly and it's essentially ignored by the doctor's. There's absolutely no compassion, no acknowledgment that the caregiver is struggling to make sense of sudden, soul crushing changes like this. The non-verbal advice seems to be: "Don't call us. We have no idea what to do."

Jewelsrr

Julie, this is my fear. I am also younger and I am getting pushback from the steps about my DH. We are just in stages of getting diagnosed and I am seeing rapid decline that his oldest daughter minimizes and of course he does too.

I also work, need the income and the respite and fear will I get the help and coverage to continue to do so?! He has some savings, I am going to check into how far that would go around here. I don’t intend to seek the house for care being 20 years younger, I need it for my own future.

I’m training to take it day by day but some recent events with his behavior occurred that are weighing on me and he is increasingly combative. I am starting to fear he is treating me as his ex wife and reliving trauma.

I hope that you get the help you need. Hang in there!

M1

With you in spirit Julie.