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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.


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4 days 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

Suewarr said...

4 days ago

wvlovnlife said...

10 days 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.

Maryanne54 said...

10 days ago

wvlovnlife said...

10 days ago

Wea said...

12 days 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.

10 days ago

Wea said...

7 days ago

Mothership said...

18 days ago

My husband had a stroke and caught it soon enough to not SEEM to have any after affects. I do notice quit a bit of "blanking out" and just not having much motivation to do anything. When he does get to a project it takes much longer than usual, like days instead of hours. He is also having ED problems. Can Warfin cause these symptoms?

Maryanne54 said...

21 days ago

My husband had a stroke (right side of brain) during a triple bypass operation. He was in the hospital for two months and I took care of him at home for three. He's a different man. He has absolutely no gratitude for anything I did for him. I can't discuss anything with him. It turns into an argument with him doing nothing but throwing road blocks. I'm almost traumatized. We are both in our sixties with no children. I have no money to leave. I feel so alone. No one understands because, on the surface and unless you know him well, he seems unchanged to everyone else.

Maryanne54 said...

21 days ago

wvlovnlife said...

10 days ago

CB1977 said...

23 days ago

I am wondering about those of you who have had to put your spouse in a long term facility, and about the financial part. It has been nearly 3 years since my husband's stroke, and it seems his progress has stalled. With him being only 61 I am concerned about him regressing to the point where I may need to put him in a facility. I'm not sure I'll always be able to care for him. This scares me. Any suggestions?

Alexis206 said...

24 days ago

I am so thankful to have found this site. Reading everyone's story makes me feel not so alone. My boyfriend had his stroke 4 weeks ago. I have been by his side every day. I have two teenagers at home and they have been amazing with the little time spent with them during the week. My friends have no clue what I'm going through. I try to open up to them but they don't understand. My best friend told me she would have left by now. I wake up at 4:30am so I have enough time to see him before I go to work. Go to work. Back to hospital to see him. Get home around 8pm. Make dinner and spend a little time with my kids and off to bed at 10pm. I'm exhausted to say the least. For the last week he's been sending (illegible) texts to my phone. He believes these messages are from my phone to his and from another man. I tried empathizing with him. Tried to show him with both phones side by side. He doesn't believe me. Then this morning he said I needed to choose between him and this unknown man. I've explained to his psychologist and his nurse. No one can seem to explain to him this is not the case. It's making me a wreck. Feeling completely lost. Sigh

BroGanSon3 said...

29 days ago

I am exhausted. I feel like a terrible wife because I don't know who my husband is anymore. I am 31 and my husband us 33. We have three children ages 8, 6, and 2. On March 24, 2017 my husband suffered a massive hemorrhagic stroke which left him in a coma for 18 days. It was long and hard for quite some time. Now, he is doing pretty well. He is physically unscathed but his mental state is so different. I look at this man I have been married to for 10 years and I SEE my husband, but I know nothing about this person. I feel like a complete failure when I ask myself if I can do this. He is so different. I try to tell others but it's impossible to understand. I feel so alone. I have searched for support groups but so far haven't found any in my area. Please tell me I am not a terrible wife?? Please tell me there are others put there that get what I am feeling???

Hehasaphasia said...

24 days ago

wvlovnlife said...

10 days ago

Overwhelmedmom3 said...

about 1 month ago

I have been married to my husband for 27 years, full of hopes and dreams and 3 children. In 2014 he had a heart attack followed by a stroke 2 days later. Physically he is able to do most things but he suffers short term memory loss, has no desire to do anything but eat, watch TV, sleep and take medicine. He's obsessed with medicine and doctors yet he still he's horribly and he's a diabetic that acts like little Debbie cakes are on the food pyramid. He has no since of responsibility, won't help at home unless he wants to like a child, tears up, destroys everything like with me working alone I have plenty of money.......most days I can't bare to be around him because he has turned to lying constantly and stuff is turning up at my house that he has stolen......I don't understand these behaviors in a 60 year old man!!!!

LynnHt said...

about 1 month ago

JJBurns said...

about 1 month ago

I've just admitted my spouse to a long term care home...I am devistated

Susan W B said...

about 1 month ago

LynnHt said...

about 1 month ago

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