Caregiving Wives of Stroke Survivors
This group is created to provide a place to encourage, give or ask for advice, or just vent to other wives who are full time caregivers to their husbands who are disabled by massive strokes.
What's New Today
1 day ago
I have been searching for a group of wives / significant other who are now responsible for the care of the spouses due to a stroke after 40 years marriage 2 children , and in 2015 hubby has a Thalamic right brain stroke. Life is completely flipped and one begins to search answers reluctantly because we are still in denial holding onto hope via faith. I belong to a couple of groups for breast cancer bi am a 10 year survivor. But now I seek support to cope with my husbands condition. So many things to discuss, questions to ask finding a path to the new normal and coping with frustration disappointment and perks boos of joy! Looking for local gatherings ( if they exist)
13 days ago
My boyfriend n I were together for 10yrs on june 3,2017 our world changed he had a massive stroke his left arm was paralyzed n left leg . After a week In icu he started rehab his parents are in their 70s n they left me do all the decisions which I had no idea what I was doing I'm 40yrs old . First rehab had I had him moved in 4 days it wasn't a good facility the second one I thought he was going to make progress he was there for 4wks n then the rehab dr. Prognosis was john would walk but with a full brace on leg n not like a normal person n that he would never have use of his arm . I sd how can u assume this your not God. John was then sent to a nursing home for a month n wk I had to fight every single wk with the insurance highmark to keep him there with therapy in process I tried to get him into healthsouth which they accepted him but insurance did not. On September 6,2017 he came home n of course he got depressed n started to degress.he didn't want to do his exercises n then his employer for 28yrs started to give john a Hassell about his ability to beable to come back to his job n then Johns dad would scream at him when he would come over to visit n Johns mom she was going thru chemo n his sister has mental problems she's 48 so mom has to attend to her. N I was doing everything 24/7 myself for john n I was getting burnt out on Sept 18,2017 I felt john should go to hospital he fought me told me I was pissing him off I called his mom she used to be a nurse she ck his vitals sd everything was fine she left I went upstairs to make dinner I heard my dog yelp I ran downstairs there was john taking convulsions turning blue blood side of face I flipped out called 911 had to have dispatcher walk me through it until paramedics got there it took almost an hr to have john respond . Once we got to er of hospital john was laughing n then he had another convulsion I flipped out screaming stroke the social worker had to calm me down they ended up keeping him for 5 days I fought with highmark nonstop to get him into healthsouth he's been there since 9-22-2017 he's being released this Saturday oct.7,2017 I have stopped eating all I do is cry n I have seen a counselor 2 times my mom has now stepped in n is having me move back home with her n her bf which I don't want to go back with my mom. I love John but I know I can't take care of him he's not the same guy that lover me n life hes now a demanding child that has disorganized thoughts n could care less about seeing or talking to me his parents refuse to sign him up for disability n do what is best for john I know they love him but their not accepting this n they have no idea how hard this is going to be to take care of john .I feel so defeated n heartbroken
22 days ago
My husband had stroke eleven years ago. He lost use of right arm and hand and right leg doesn't work very well. He is very accepting of his situation which I am thankful for. He is 74 and I am 70. I am not sure what I am complaining about but I am feeling like my life is over. Other than taking care of him, I don't have anything to look forward to. Glad I found this group. Maybe I will learn how others are coping.
22 days ago
Someone here in a comment put it very well. She wrote that the stroke had amplified all of her husband's bad traits It's true. I am noticing that myself. My husband's vices are worse than ever, with a few new ones. On the other hand, his good traits are all but gone. It's the oddest thing. Everything I loved about him is all but gone.
about 1 month ago
My 44 year old husband had a stroke on 3/4/17 during surgery to remove a brain tumor. We were warned that he may come out of surgery with temporary facial paralysis and other possible risks. Never did the surgeons warn us that he would need a walker to walk because of severe damage to his balance nerve, or that he'd most likely never drive a car again, or that our son would need to shave his dads hair because he can't raise his arm, or that his impulsivity would be off the charts, or the amount of patience we need to listen to him, or.....so many other issues. I'm realizing I need to find space to just unload all the daily "stuff" and it's not fair to our kids for me to unload on them. At times I feel almost like a single parent, I wish to be as positive as possible, but it's so difficult.
about 1 month ago
How do you know what to do? I feel like I am at the breaking point. My husband suffered two massive strokes on 1/7/16 at 46 years old. We have two children that are now 12 and 10. I am exhausted. My husband has not come back. He lacks judgment, reasoning and empathy. His has severe Aphasia and Apraxia where he cannot read or write and his speech/cognition highly impaired. It seems like we are only left with amplified bad personality traits where he is angry in every encounter. I am exhausted. Trying to keep my family together, but not sure if I can keep holding us together. Friends don't understand and his family has not helped. Sad often. There seem to be a lack of resources out there. If anyone has suggested books or other groups out there that might be helpful, please let me know.
2 months ago
My husband had a stroke 5 years ago. We have been married for 38 years. He was in hospital for 2 months and rehave. for a further month. He was left with limited use of his right arm and left leg and is unable to speak or swallow food. He is fed via a PEG with a special "formula ". He attended OT, PT and speech along with seeing a physiatrist. This last 2 years in the end he was able to walk, all be it limited distance, and he has a wheelchair for the longer distances. He also develop epilepsy as a result of the stroke. He is very demandingwhen I am home and wants my immediate attention if he wants something done no matter what I am doing at the time. His personalality changed after the stroke to a more gentler side which was a plus. After his initial recovery he became more positive but as the time has gone by he has got into a rut. Gets up late then moves to the couch sits on his tablet playing solitaire or watching u tube has a shower around 3 then back to the couch till I get home from work then we watch a bit of TV and go to bed next day and everyday the same. When I suggest we go out he often won't, if we do go out he wants to go home after a few hours. He is able to manage in the day time alone I just need to load up his pill container. To get him to be more mobile I have had to get a personal trainer in once a week who gives him exercise to do the rest of the week which of course he rearly does. I am feeling frustrated as he is not only wasting away do to lack of excersise but he has affected my lifestyle to the point that I resent him but then feel guilty if I go out alone, I left him at home 2 years ago to go and watch my grandson compete at bmx world championship in Belgium, my kids stepped in and look after him. Being free was the best week of the last 5 years. Our kids found out how demanding he can be. I feel like a house mate / caregiver rather than a wife. I often wonder if he had not survived, which was very very close, it would have been better for him, before the Stoke he ran a very successful business, was always the life and soul of a party and generally enjoyed life to the full. We travelled both locally and abroad and we're looking forward to our retirement. This is not the future he or I were planning.
Am I being selfish? I am not in a good place at the moment and find myself pushing him every day to exercise, he is wasting away. I just want to be loved and appreciated not a nurse
2 months ago
My husband, age 51, suffered a stroke 3/5/17.
I married late in life (early forties) and the same with my husband. It is the first marriage for both of us and we have no children. He owns his own business, but I have been the primary money maker, and he is fine with that. I am a teacher with two masters, 24 years of experience, and National Board Certification. So he is on my insurance. Since he has flexible hours, I depended on him a lot....going to bank, grocery shopping, going to post office, etc. To our dismay, his blood pressure was sky high and it killed his kidneys. Luckily his sister donated a kidney and he had his transplant in 2012 (we married in 2009). That was hard, but he went back to work before he was supposed to and had very few issues. His work ethic is outstanding. He then got skin cancer (side effect of transplant), but is cancer free. Before I met him, he was diagnosed with Crohn's disease which caused him to have three feet of his small intestine removed.
At the end of 2016, he noticed swelling in his leg and he was diagnosed with a blood clot (DVT) which traveled to his lung.
Due to reasons that would take another post to write, I had to resign for MY medical reasons from teaching 1/20/17. We had it figured out and could make it. My parents have a place where we live and we were going to sell our place. Then fate hit. On 3/5/17 my husband suffered a stroke due to a blood clot in the mid left of his brain. It is not related to his DVT or the clot in his lung. It is a mystery. His entire right side was paralyzed and we spent 5 days in the hospital, then 21 days in a rehab hospital. His speech improved, but is not where it needs to be, his right leg starting moving, and he has no use of his right arm. He is confined to a wheelchair. We have NO income. NONE. Especially after I did his taxes. I was with him every night until last Wednesday (8/2). We lived off of the generosity of others and credit cards. But luckily, I got a job which starts this Thursday and he qualifies for disability in September. I see the light at the end of the tunnel.
We are five months out, but has anyone experienced caregiver burnout? He has GOT to learn how to do things and NOT depend on me 24/7. He has therapy twice a week for speech, PT and OT. I have no clue what he will get back, and whether he will be able to do his business. He blames EVERYTHING on me and other people when things go wrong. I have been VERY frustrated because he moved back to our place which I am in the process of remodeling. He has regressed tremendously. He actually tried to take a shower when I specifically told him not to w/o me. Of course, I walked in and found him on the floor. His spirit is gone. I am at my wits end. He doesn't listen to me and I really think he acts like things are worse than they really are, as if he wants to prove me wrong. I HAVE to go to work, which is in a different district, about 45 minutes away. I am trying to find transportation for him, but I am so frustrated. As it should be, a lot of attention is given to my husband. But NO ONE has a clue what I go through every day. I worry, worry, worry. Any advice or just knowing what I am going through is not uncommon will help so much. He suddenly doesn't know how to push off of the bed to get up. He refuses....and grabs for his walker, which of course, causes him to fall. He wants independence, but wants to do things he "has always done". I call it BS....Before Stroke. Thanks for giving me this outlet. Sorry so long.
2 months ago
My husband had a massive stroke in 2014. After 6 months in the hospital and then a nursing home, he came home. He understands everything, but can no longer use his right arm or hand and his right leg drags when he walks. I was working full time. He had retired early, a few years before he had his stroke. I am retiring this year, to take better care of him. I had a knee-replacement surgery after putting up with the pain a year and am now facing left-hip replacement because the pain is still quite severe. My problem is that my husband is now physically healthier than I am but has become lazy. He won't use his lift chair/recliner to lean forward to take his medicine off the bookcase where I have been counting it out and putting it for months. He can lean up to eat, change channels and so on but wanted me to come in and hand it to him instead of going forward 2 feet in his electric chair and getting it himself. I feel so unhappy about this. I just had to tell someone.
Load More Conversations