I'm not sure I'm strong enough to do this

Kellybelle · July 12

My DH was diagnosed a year ago, but was having issues for a few years prior. I thought the progression was slow, but this past week has been a big change. He's either so sleepy, crabby or not eating. I don't know what's happening. He was upset with me this morning for going to work, telling me I don't have enough time for him and I'm not taking care of him enough. I cried all the way to work. He's my best friend and this is NOT his nature at all. We've been married 40 years and I'd move heaven and earth to help him but how do I not take it personally? I feel like I'm choosing work over him and only because I have to work, he's on disability. Any suggestions are appreciated. God bless you all

dcare45 · July 12

I completely understand what you are going through. I felt guilty going to work and leaving her alone. I felt guilty going to work and having family with her when she could not be left alone anymore. I used family leave and a whole lot of vacation time to fill in as I could to keep my insurance. I have since had to stop working to take care of DW. None of this is easy.

Learning to not take it personally is key to survival. We are about 6.5 years into this journey, and a lot of things have been said. Most of the hurtful things were from anxiety and DWs dealing with the changes she was going through. In hindsight I realized that she was frustrated and didn't understand what was going on around her in the "real" world. It is a difficult time; however, the world continues on and you have to do what you have to do.

Maybe he doesn't like being alone when you're gone. I used an Adult Enrichment Center near me. I could drop DW off, go to work and pick her up when I was done. It's not cheap out of pocket but if there is one near you, they can probably help with Medicare or Medicaid and payment options. I know Medicare has a GUIDE program that helps a little. Some MC facilities may also offer daycare type settings.

Don't be hard on yourself you are dealing with something very difficult. Cry when you need to.

Al2024 · July 12

I have tried something that works for us. I've always joked a lot, so I tell her how pretty she is, how happy she makes me feel, how I miss her, how I want to have sex, how excited she makes me. I also tell her I've had doctor training by watching all the doctor TV shows and I know that I can solve any pain she has by massaging her somewhere that has nothing to do with the pain area. Even tho I overdo it, it always makes her laugh, so she doesn't get negative. She's in middle stage (8 years) and she now makes more negative comments about drivers and other people, but she hasn't complained about me. . . yet.

SDianeL · July 14

Please don't feel guilty. You're doing the best you can. His world is falling apart and you are his anchor. His complaints are caused by anxiety of being left alone. Very soon you will have to quit work, pay for 24/7 care or place him in memory care. It's no longer safe to leave him alone. He could start a fire and not know what to do. He could wander off and be in danger. He is vulnerable for scammers. You have some difficult decisions to make. Please don't wait. Meanwhile, check into the GUIDE Program and Adult Day Care with your county. Fib to him and tell him they need his help.

jgreen · July 15

Hi, @Kellybelle

I would like to add on to what others have said and that is to look into FMLA (family medical leave) at your workplace. You could use some time to start looking into different options for your DH since you feel you still need to work. Aso get with an Elder Care Attorney and get all legal papers in order now - durable power of attorney, HIPPA, Advanced Directives, Will/Trust, etc.

Stay in touch and let us know how you are doing. We care.

Lilydaisy · July 17

My situation is not like yours, but I do have a couple reactions from my experience. First is that you are already doing what you feel needs to be done. Feel comforted by that. Doing what seems right is all you can do.

Work is necessary for you, so you have to work around that. As others suggested, there may be daycare programs near you that will help. Maybe you will need to reduce your work time somewhat. It doesn't sound like a MC facility is needed at this time, but it might be good for you to get educated for the future. With Medicaid or disability some or more of the costs might be covered.

For you to be so aware and concerned this early is such a positive. This will likely be the hardest thing you ever do, and somehow you will make it through. You are on top of it. Best wishes.

I'm not sure I'm strong enough to do this

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