Hi Joan - thank you again for sharing your heart with us. I so needed this today. We are headed to the neurologist Monday for her to tell my hubby that he can no longer drive. He will react much the way your husband did and I have dreaded this and have been so angry with him. Your comments reminded where my priorities should be. I admire you for being willing to share this, especially with all you are/have been going through.
Joan, it has been me and there are times when I rationalize that my illness is not as devastating and even though I have mobility problems, I can still think and reason. Guess what, that's a rationalization. My wonderful loving husband and best friend married me knowing I had an uncontrollable case of RA long before any of the biologic medicines were on the horizon. So my (our) fate was increased physical limitaions and destruction. He married me anyway, never complained about the limitaions my illness created and was always faithful and loving. Stood by me when I needed joint replacement surgeries at 38, helped me with MY ADLS when my hands became twisted and semi functional. arranged for wheelchairs/help when we wanted to travel overseas. He allowed me and us to have a normal life and I will be forever grateful.
Yes, my limitations due to my illness complicate my caregiving for him and yes, I get frustrated and angry. But honestly when I reflect on our relationship before his dementia dx, he was always helpful and supportive, never expressed anger or frustration about my deteriorating condition and the additional burdens that placed on him. I try very hard to remember that he handled my illness with grace and that I owe him the same. It's very different dealing with someone with very difficult behavioral issues than someone with a physical disability, but he never complained and deserves the same patience and love he gave me. Yes, it's hard. And I'm still working on it.
This week I have a slightly different perspective on this. Practically every minute all week I have run myself ragged, trying to take care of DH and everything he needs. One day when I had hours of things yet to do, I actually had to sit down and just stop everything until my hands stopped shaking, because I was so stressed and so exhausted. There are so many things that have to be done—doctor's visits, phone calls, physical therapy, taxes, the social security representative payee report, and now the yearly Medicaid review. (Last year they "mistakenly" terminated all of DH's benefits, so I'm really dreading going through this again.) And that's in addition to the normal household things like cooking and cleaning and paying the bills. Many times I have felt like I was killing myself to make sure that DH was taken care of. It's been over ten years since DH was diagnosed, and all these years are really taking a toll.
Maybe it's expecting too much of ourselves to have to do all that, and to never snap. I try to be calm and kind all the time, but sometimes I just have to get away from all this. And that's hard to do when I'm on duty 24 hours a day. My only escape sometimes is to go into another room—and close and lock the door--and be by myself until I'm able to face all this again.
As I have reminded my husband from time to time, before his diagnosis I wasn't always Mary Sunshine, either. Both of us sometimes got irritated with the other person. That's part of marriage, or at least it was part of ours.
At our last support group, somebody asked why we always make ourselves feel guilty for every little thing. Are we supposed to do this year after year, and never make a mistake or get irritated? I don't mean being out of control and raging at our spouses, but just aggravated and short—and exhausted and used up. It's hard to be calm and loving when every nerve is already raw.
Sometimes when I feel like I should be doing things differently, or doing them better, or doing more, I have to remind myself of all the years now that I have stood by DH's side, doing the best I can to keep him happy and safe and well cared for. I think that counts for more than the very occasional sharp word or lack of patience. And I believe DH would agree with me.
Jan K, reading your post brings back deep sad feelings for me. About how do we really do all this? You know, it has been just short of 3 months since Dado was placed, and I am STILL recovering, just can't seem to stop sleeping. And the paperwork and stress is still on going, though, being rested makes so much difference.
It almost seems inhuman. Where do we dig up this strength.? I feel so much for all of you.
Yes, what if it was me...we can only do what we can at the time, as best we can. Dh has been in the NH 9 months now....and it seems more like an eternity, still having issues with a little agression and meds. Some days I just want to bring him home.
Joan, when I first started to read here, I thought you were a "superwoman" with the multiple demands you dealt with daily. I don't know how you took care of your dad, your husband and your own health issues, besides all of the other obligations. Go easy on yourself- I am sure your husband is very grateful for you regardless if you snap at him once in awhile. I think we as caregivers have all wondered what if it were us. It is a very frightening thought - to be totally dependent on someone else. We would all hope to be treated with dignity and kindness, but know there would also be frustrations flaring at times. I think everyone here needs to forgive themselves for those little once in awhile outbursts - we are just human.
Your blog was so thought provokingly and honest. This has to be the very best one yet~!!!! It's refreshing to see your not "wonderwoman", but close enough!
Your humbly truthfulness has made me stop and reevaulate and self exam myself. Perhaps when my feet land on the floor before my day begins I should reflect and read this post and remind myself daily.
Dear Joan, What can I say, I totally empathize with you. It is not easy to maintain our patience, good natures and charm when we're burned out and tired. How many of you have had an occasion to scream at your children for exactly the same things that we are experiencing with our spouses? It happens. The good news with our spouses is that they don't remember our break-downs and they forgive readily - one of the only silver linings of this disease. I often remind myself that one day this could be me in this condition and I truly hope that whoever is caring for me shows me love and compassion. That thought and lots of prayer and very good friends are what keep me civil and not suicidal.
Hang in there, Joan; you have done so much for so many for a very long time. I'm so glad that you're getting help now.