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What is new normal after stroke?
Six months ago, my husband, age 56, had a massive ischemic stroke as a result of a freak injury to his carotid artery. He has limited mobility, can’t use his right arm, apraxia of speech, and severe expressive aphasia. He can only say “yes” and “no.” He receives PT, OT and SLT. I am his only caregiver (we have no local family), work full-time, am raising our teenage son and am responsible for everyone and everything. Weekdays are beyond exhausting. Our son and I have been going to counseling to learn coping skills and therapy has been helpful. My husband and I have been married for almost 20 years and had a very strong relationship which I can feel slipping away. He has become my adult dependent instead of my partner. He could not function in the world without me.
I would like to hear tips on how other couples keep their marriages strong through the recovery period and beyond. Up to now we have been waiting for recovery to happen (and some has), but I am realizing that many of his disabilities are going to be long term, and we have to find our new normal. Thanks in advance for sharing your experience.
Teresascott, February 3, 2019 12:40am EST
I know it’s not easy to cope with seeing your loved one in a helpless situation after trying all your best to make sure he gets well. My mom was once in such condition (Ishaemic stroke) before she got well again. I believe with proper therapy and diet he will get well soon. Don’t give up yet.
Kdogg240, February 3, 2019 10:03am EST
Hi Brenna3, my wife had an ischemic and hemorrhagic stroke almost 3yrs ago. We had a 14 month old child at the time. There are a lot of similar situations that you feel that I can relate too. Her progress has been slow, but positive. I don’t know if she will ever be 100% again. We have been together for almost 20yrs, and this has been a huge struggle for us and our marriage. It’s sounds like you are doing the right thing by getting yourself and tour child to therapy to learn how to manage your situation. This forum is a great place to reach out and possibly get some advice to help you along your journey. My wife also has servere aphasia, although she did gain back her mobility. She now has seizures and I did have to leave my job to become her full time caregiver. Just please remember to take time for yourself to recover, as I sometimes forget to do. Your health is also very important to your husbands recovery. He needs you, and I know it can be taxing on the mind to think your alone in this process. Rely on your child for help, you said they are a tennager so maybe they are a old enough to give you that relief. I know you probably don’t want to burden your child with adult responsibilities, but you can’t do this alone. I hope he or she understands, and is willing.We were all teenagers at one point in our lives and know teenagers have their own things going on. My child is not old enough to really give us help. I sometimes wish our child was older so they could help. But then I realize how much we would miss out on watching them grow. Just remember how important your marriage is to this recovery process for your husband. I have struggled knowing this will probably be our new normal and have recently found calm and peace. It took a long time to get my mind there, but it has paid off tremendously. I still have bad days but they are fewer than before. Everyone has to take time to find their comfort zone, just stay strong for yourself, and know that your child and husband will be better off in the long run for it. Until I found my calm, I would cause a lot of unnecessary stress to our family. Having a small child this was not good. It caused behavioral problems for our child and caused our marriage to spiral downwards. Things are looking up now since I found my calm. His behavior has began to get better and we found a way to get rid of some of the stress that this has caused. Good luck to you and your family. We will be praying for you guys. And please feel free to post anything on your mind. As I know it has helped me tremendously in my thought process.
Mysky00, February 13, 2019 1:32pm EST
We have very similar stories. My husband had an ishemic stroke at the age of 54. At that time we had been married for just over 25 years. Our daughter was just shy of 11 when the stroke occured. I work full time as an RN at the VA Medical Center, so I am a 24 hour a day caregiver. How my husbands stroke happened is a bit different. He was a truck driver with a 'just in time' load to in Lexington KY. His load wasn't due till 7am he had "the worst headache I have ever had" so he went to the truck stop to get some sleep. I called him on my way to work the next morning, it sounded like I had woke him so I quickly said I'll call you later, love you, bye, click ... that is the last I spoke to him until I saw him the next day at the hospital. His trucking company ignored all of my pleads to find him (they had GPS in the truck and he had not responded to them calling him twice) until 1am the next morning. The trucking company called the truck stop where his truck ws parked, sent a clerk out, she knocked on his door, my husband started kicking things with the leg he could move, they called the state police who broke into his truck and called the ambulance. THe clerk at the truck stop is who called me from my husbands phone to let me know where they were taking him. This was the beginning of a journey that we aare still on. I can appreciate your comment about an adult dependant. I feel like as our daughter has progressed through her teens and into young adulthood (she is now almost 19), that my husband had stayed in the terrible teens. He fights with her like he is her younger sibling. My husband had a right frontal/parital brain stroke, this means that his right side was affected. He has no use of his left arm at all, minimal use of his left leg, and no filter or reasoning ability. he wears a breif as he has difficulty holding his bladder. He spends money recklessly, so I have had to put financal limits on him. He through tamtrums and there is no adult conversation. I so understand where you are coming from. But some how some way I have never lost that glimps of the man that was my soul mate, my best friend, that being said, FAITH truly is the reason we just celebrated 33 years. I meant what I said when I said for richer or poorer in sickness and in health. This doesn't have to be like a life sentence. I have few friends left, seems like our friends list became very short as his disabilities became more perminant. Church groups, small circle of friends from work and new hobbies help. My husbands new personality loves watching TV and movies, so I find that in order to put some sort of normalty into our lives we go to movies. He doesn't act out and I have some down time. Every person is different, but sitting next to him with my headphones on and reading while he watches his TV show helps us have time together that requires nothing of me and yet feels like it keeps us connected. It is very hard in that we were a very loving intimate couple prior to his stroke and we are not post stroke. I feel like you have to figure out a way to connect that requires nothing from you otherwise you just feel drained all the time. Find an hour on a Saturday morning to go have a cup of coffee even if it is only you and a magazine. life isn't the same, you grieve the loss, I still do, but you have to find a way in this new relationship to not spiral into depression from the loss and to live in the new. I am 8 years in and still struggle with the emotions of loss but he's still here. I don't have any miricle answers, just know that you are not alone, and even if it is just as a sounding board, I am here.
cmkmt, March 8, 2019 11:47am EST
My husband had 3 strokes 4 and 3 years ago. Left side neglect, speech impairment, no comprehension of time and numbers, especially anything financial. With a minor child you can stop the spending but with an adult it is very difficult. The husband I knew is gone but for some brief moments. He is very angry with me and I am with him because his spending plus the medical expenses have forced me to put him on a strict budget which he doesn’t understand. Family and friends have long gone or were never onboard in the first place. Sorry if I sound negative but it has been one of those weeks. I wish I could find my calm place some how. I was in the hospital yesterday for a procedure that required anesthesia and wanted to tell them can you make it last a few weeks so I can get some rest.
Laura’s comment made me smile. I also sit with my headphones on trying to get a break. Unfortunately my husband is extremely restless and demands a lot of attention. If I ignore it he stares at me and until I give in. Like right now...
Takeum, March 27, 2019 12:51pm ESThi,,,I'm Andy and my story is a tad different but yet very much the same n many ways,, I'm a 59 yr old husband and my wife at 57 had a double stroke on the base of her brain on the right side first , then the second stroke hit 4'days later n her left side,,, this has affected her mostly on her right side where her hand , arm and leg still after 1'yr and half haven't quite allowed her to stand on her own nor write or use her right arm and hand quite yet... She was a very hard worker when this affected her now some 18 months ago, and she hasn't lost her fight yet....zi always remind her that as long as she fights a good fight,,, I'll stand by her side as long as it takes,,,we were always very close before the strokes and now it seems things have changed,,,every time I start feeling sorry for myself, I think what it would be if things were reversed,,,I know she would do everything in her power to care for me, so I continue dig down deep each and everyday and try not to grumble or loose hope...we have two sons, but both have moved away after college ,and both have children, wives and jobs they need t care for their families,,, I am the Only person she trusts and it's good enough for me, as long as God gives me the strength, I will carry on with the hope of better days ahead,,,,much love to you and yours.. May God give us strength to endure!