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I am having a BAD day
My husband had a total of 8 strokes before this last one in April 2019 - we took him to Mayo because the local (and very well respected) hospital here stated that they couldn't figure out the cause of the strokes even though I kept telling them it had to be the valve replacement as all the problems didn't start until then but, unfortunately, the tests said otherwise. Thankfully Mayo found out it was the valve (it was kinked and had a small **** in it) and replaced it with a mechanical one so the strokes stopped but the damage was done. The first 7 strokes luckily didn't cause any permanent effect but this last one along with the long surgery caused him to have severe cognitive issues. The issues are that his empathy is gone, he has no short term memory and he lies in bed all day watching t.v. He has very little energy and it is very difficult to get him to even take a shower. He is still sweet but, unfortunately, I find myself trying to be understanding and realizing intellectually he can't help it but getting frustrated and upset because I am now responsible for everything. I work all day at home and when I ask him to do things he won't and argues with me that he shouldn't have to. I have had him tested several times for depression but they say he is not depressed and that his behavior is an effect of his brain damage. Luckily he has no physical issues but I am SO tired and want my husband and my life back. Our financial situation has changed drastically as we only have my salary and his SSD and before he was making the larger amount as a realtor. I feel so alone and although my friends are understanding of my situation, they don't understand that this is not something he can control so I get things like "tell him he needs to help", etc. which given his cognitive abilities, does not help. Today is bad because last night he had one of his vivid dreams where he got up and then woke me up telling me that we had a problem - when I asked him what it was he said that he had made rabbit stew and it had disappeared so we had nothing for dinner (we've never eaten rabbit stew in our lives). I finally convinced him it was a dream and then he woke me up at 9 and I asked him to make coffee as I was really tired. He whined that he didn't want to and I should make it I got tired of fussing at him about it and just did it myself but it made me sad and weepy. Now, I'm just exhausted and angry so I'm letting him watch his tv so I don't take it out on him. I am seeing a counselor but there isn't much she can say except "take care of yourself" - he had therapy for over a year and the cognitive therapist told us there was nothing more she could do for him. Took him to another one and she said the same thing. He doesn't need physical therapy although I make him take a walk at least once a day to keep his physical strength up. I am worn out and don't know where to turn! Two of our adult sons live with us but they work all day and don't want to hear anything negative about his dad so if I complain, I feel like a b%#%. Our family was so close but now I just feel whiny and ungrateful - I've lost so much but he's still alive and I know I should just be grateful but I've lost the essence of the man I've loved for 35 years. I don't know what to do anymore.
AHAASAKatie, September 9, 2020 10:09am EST
Good morning, I am so sorry that your family is having to manage all of this. Please know that caregiving is hard and you are allowed to have times that you feel challenged and angry. I am sharing my most favorite article from Huffington Post When Caregivers are Honest it Makes Folks Very Uncomfortable. Please know that we are here for you and understand.
JKViggiano, September 9, 2020 1:42pm EST
I am so sorry for your situation. You are right--no one really gets it unless they have been through it. I don't know if this will be helpful or not, but here is what helped me:
My husband survived a massive stroke 12 years ago, when he was 51. He lost the use of the right side of his body, his memory, and his ability to talk or organize his thoughts. He was completely disconnected from reality for probably 2 years. The good thing was that he had no idea how disabled he was so he was very willing to work on recovery and fully believed he would be 100% in no time. The hard thing was that he couldn't actually do anything and all responsibility fell on me.
It took a lot of crying in my closet and a lot of energy spent trying to control everything for me to finally surrender. I finally said goodby to our old life. I accepted that we had to make a new life, and it was up to us to make that new life good. Different, but good. I spent a lot of time thinking through my wedding vows and all I promised that day. My life became a life of service and encouragement. I focused only on the day we were living and tried not to look ahead too much. I handed all my worries and concerns over to God and asked Him to carry me. I was not strong enough to carry the load alone. It was freeing. Everything was better.
Don't get me wrong, we still worked ******* recovery. Like you, walking for us was essential--blood and oxygen flow to the brain, physical exercise, and fun wrapped into one activity. I read to him (he can't read anymore but listening to a story made him use his brain). We did his therapy exercises 5 days a week for 8 years. We scheduled everything. I found that a calendar helped both of us. We had time slots for everything so it wasn't me nagging--it was on the calendar! We also rewarded ourselves with small joys, like coffee at Starbucks, a walk by the lake, whatever. Fun was also essential for both of us.
You can only do your best. Enlist your sons to do an activity with him (play cards, play catch, read, etc), even for a few minutes. Anything helps. Set some goals if you can--it is hard to move forward if you don't know where you hope to get. Good luck.
Judy83059, September 9, 2020 9:32pm EST
Thank you for reaching out to share. I couldn't respond promptly because I, like you, work full-time while caring for my husband.
My husband had the first of 4 strokes 15 years ago. We've been married 32 years. Over all of these years one of the hardest things for me has been giving up my dreams and expectations about what our life together would be like. Sometimes this comes out as resentment, sometimes as disappointment, sometimes as deep grief.
Like the person in the previous post, the only way I've been able to get beyond any of this is by trying to hand it over to God. During the past few months while my husband and I have spent far more time alone together, God has given me grace to let go more than I have in the past. My improved attitude has resulted in my husband smiling at me more often than I can remember in all the previous 15 years. My 1attitude has such an impact on his!
Oops! Gotta go. I've run out of time. That's my life!
bahami1019, September 14, 2020 12:58pm EST
Thanks to all of you for being so supportive. I have good days and bad days - for some reason it seems like Sundays are the worst. I agree with you all grieving for my old life and what my expectations are - there are days I really feel like "I've got this" and have accepted it and then I get slammed with something out of the blue that just sends me into sadness and grief again. I've always been a planner so this "new world" is difficult to get used to. His doctor recently told me that he was so impressed with me because without my determination to find out what was wrong with him and the energy I've put into helping him get better he would not have survived. While that made me feel good, I also felt that if the doctors had listened to me in the first place we wouldn't be in this situation (it wasn't this particular doctor that didn't listen but I'm speaking in general). I always felt like a lot of situations that happen to you are because of the decisions you make but in this situation, there wasn't anything I could do to stop or reverse the damage. I appreciate all of you and I'm sure I'll be fine but there will be good days and bad ones. Thanks again