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Any young(ish) stroke spouse caregivers?
hi, just wondering if there are any others on this forum in a similar situation to mine who might be interested in connecting for mutual support. My wife suffered an ischemic stroke nearly 5 years ago at age 43. She has recovered to the point where she is mostly self sufficient around the house, but has no use of one hand, walks slowly and with difficulty with a brace and cane, and is not certified to drive (and is unlikely to ever be). That leaves me as the caregiver, the breadwinner full time, and also responsible for pretty much everything at home (shopping, cleaning, cooking, finances...) as well as all transportation etc. we have two kids, now 10 and 13, so most of the parenting falls to me as well. This is very difficult but would be manageable, except for the fact that the combination of cognitive effects, depression and antidepressant medications has left my wife with emotional blunting, so is unable to provide really any emotional support or meaningful intimacy of any kind, leaving me feeling constantly profoundly lonely even though i am physically present with my family. The only local support group for caregivers meets infrequently and consists of entirely people 20+ years older with different challenges. It seems to keep getting more difficult as I get further and further away from having any emotional support from anyone, but still so many responsibilities and no way for it ever to end. Anyone else in a similar situation or have any advice? Thanks!
Whittygirl53, December 30, 2018 3:20pm EST
Hi there and hoping that your holiday season was a smooth one. Although my husband and I are in the “older “ group (he’s 64, I’m 55) I too have found that the support groups seem to be geared towards elderly. Jack suffered a stroke in December of 2016 and the nightmare had not been easy. He has others health issues as well but what he’s going through emotionally is awful. That puts me on the receiving end and although I’m sure he appreciates what I do he jokingly refers to me as Nurse Ratchet. I’ve finally decided to reach out ( outside of the family) for some help.Have you been able to find any support online? If yes, do you feel it’s help?
JKViggiano, December 31, 2018 6:00pm EST
Hi Roxbob. Boy, your note brought back a lot of memories for me. My husband was 51 and I was 48 when he survived a massive stroke and our lives were forever changed. We couldn't find anyone like us either. The support groups were all retirees while we had kids at home. One reason I ended up writing a book about the experience was because I knew there had to be other people like us--I just couldn't find them.
A blessing/curse for us was that my husband was so damaged that he was completely disconnected from reality. It didn't even occur to him that he was really bad off so he never became depressed. The kids and I had to deal with his wild emotional swings that now, 11 years later, I see has had lasting effects on them. He has always been extremely goal oriented so recovery was his sole focus. I think his eternal optimism is one of the biggest reasons we made it through those early years.
I hope you ask for help. Do you have family in the area? A church family? People want to help but they don't know how unless you tell them. Be specific.
I was warned when my husband was in rehab that the therapists watched relationships fall apart all the time. The relationships either ended or devolved into caregiver/survivor relationship. This might sound impossible but try to work on your marriage. It's hard but it is worth it for you, your wife, and your children. Perhaps you and your wife can decide together what you want the future to look like. Then you can work together to achieve it. I can tell you that our life is good again, different but good. That only happened because we were intentional about it.
As the caregiver, I needed a schedule. Specific days and times I worked on finances. Specific days and times we worked on recovery. Everyday, we did something fun--a walk, a drive, a coffee, anything to get us out of our situation for a moment. A clear schedule allowed me to focus on the moment, give my kids quality time, and let me feel like I had accomplished something.
My heart goes out to you and your wife and your kids. If it might help, my book is Painful Blessing (J Viggiano) on Amazon.
roxbob, January 2, 2019 3:38pm EST
Thanks to you both for the replies!
Whittygirl, best wishes to you and your husband, and sorry you're going through this as well. I've found a couple of support groups online, but I haven't found occasional emails or message replies to be too helpful, frankly. One thing you might try is the well spouse association, to see if they have any support groups in your area: https://wellspouse.org/local-support-groups/?cat_id=7&view=listcats I thnk if the members of the group in my area had anyone in even a remotely similar situation, it would have been helpful, but unfortunately the one nearby (southern CT) didn't turn out to be a good match for me. Hope you have better luck!
JK, thanks for the info, I'll definitely give your book a try. Sounds like your husband's reaction was the polar opposite of my wife's - her depression and anxiety is pretty profound, and that has resulted in more apathy than focus on recovery. That also is a huge challenge to the work on the marriage - we're in therapy, but when our therapist gives her an "assignment" she never follows through, and that adds to my resentment, which is already sky high because I'm left to do absolutely everything else, too. Her m.o. is generally just to lose herself in her book, games on her phone, etc., and just tune me out. Over the break we traveled a total of about 5.5 hours to visit relatives, and out of that time in the car she spoke a total of about 10 words to me. So, I'm getting to the point where I don't know how to work on the marriage, I'm willing, but I can't to 100% of that work, too. Still, I appreciate your advice, and the knowledge is helpful that it's possible to even get to a place that's good.
As for help, we're financially able to get some cleaning help, and during the warm months I get the lawn mowed. No family nearby, although my mom comes to visit for an overnight every couple of months to lend a hand for a day or two. We have a couple very good friends in town that help my wife with rides and the occasional social coffee. etc. I also thankfully also have a very supportive boss, so when I have to suddenly leave to get a kid who's sick at school etc., its not a problem. Besides that though, I'm the guy. At this point I'm pretty used to being efficient and working nearly constantly to do what needs to be done, so what I really need is the thing that I can't ask for help with - how to regain an emotional connection with my wife so I don't feel like I'm in this thing alone (along with the guilt at feeling that way given that I'm the "well" spouse).
Anyway, thanks again to you both - best wishes and happy new year!
Dj1492, January 2, 2019 10:48pm EST
I have not sought out a caregiver support group before today. Not sure why today was the day. However, I felt like your post was a mirror image of my situation. We are slightly further along though. I'm 50, wife was 45 when she had a massive stroke a little over 6 years ago; kids are in their late teens. I feel as though your original post could have been written by me. The addition for me is that all of our friends have vanished in recent years. We stopped getting invited to things a few years ago. My wife has no use of her left arm and can only walk very short distances. Most people's houses aren't easy to navigate with a wheelchair. Then they stopped coming over when invited and now no longer even respond.
We definitively are not very exciting to be around any more. Conversations are difficult and often one sided. My wife is a very different person to me. She likes different foods, laughs at different things, even has different tastes in movies and TV. Some days, she is a stranger to me but she doesn't seem to realize it.
It's challenging, but I still try. I'm not sure I'm doing as well as I used to. All of her doctors told us she would be back to 95% within the first year. We're nowhere near that. I think at some level we both expected her to just get over this like she had a cold. She would only do her rehab at home if i forced it and there were only so many hours in the day.
Anyway, so sorry about your situation. You are by no means alone. I'm right there with you. I'm not the type that asks for help... Ever, so thanks for letting me vent.
pbianco, January 5, 2019 3:13am EST
Hi Roxbob, thank you for your post (and Whittygirl, JK, and DJ for your responses) -- sending warm thoughts to you and your wife.
I'm the partner of a young survivor but we're in a slightly different situation (he's 35, I'm 30 -- no kids, not married, only together a few years so far, his stroke was a few months ago), but I feel less alone just reading your words.
Re: emotional connection, I'm not sure if this is the kind of thing you're looking for since you say you're already in couples therapy, but I did find two podcast episodes that were really helpful to me about some strategies for addressing intimacy and emotional changes in a relationship post-health crisis --The podcast is "Where Should We Begin?" and the episodes are Season 2, Episode 8 "I Don't Want to Be Your Caregiver, I Want to be Your Wife" and Season 2 Episode 4 "Leaving the Shame Behind." Both are very intimate recordings of discussions btwn couples and a counselor post health-crisis/ integration of caregiving (neither is stroke but concerns seem to be similar -- the first is early onset Parkinson's, the other heart attack that resulted in some stroke-like cognitive and mobility limitations), and both couples are close in age to you and your wife and have young children at home.
For whatever it's worth, it sounds like you are doing an incredible job navigating this experience with grace and strength, and I think there's a lot of beauty in what you've written, especially the part about the guilt of feeling this way when you're the well one--Certainly resonates for me.
If you all have any other advice about resources for young survivors or young caregivers of survivors (people or support groups would be great, but books, articles, I'll take whatever!) would love to hear your wisdom.
Thanks again for your post --
Vegas, January 12, 2019 3:56pm EST
Hey Bob and everybody, My story is under Blue baby& disabled union in the survivors stories so actually had a stroke but have some insight. I had my stroke at age 5 in 1984 and have struggled with relationships due to the stroke. I think there are a lot of needs in a relationship and maybe the best way to make sure everyone is okay is to have an open relationship with other couples going through a similar thing. Pretending everything is fine which is a lie can lead to resentment and cheating, this way everything is out in the open and people can enjoy each other and new experiances.
There are situations where the stroke was so bad the person can't consent, I am NOT talking about those. Otherwise it's just some adults having fun.
If this suggestion isn't for you I wish you would pass it on to the younger group your a part of. Show them this so you don't look like a perv.
NLavie, January 16, 2019 1:36am EST
Oh god I hear you. I hesitate to write about the degree of lonliness and despair I feel as a caregiver on a forum meant to uplift. I am brand new to this site (you are my first post) and seeing your comment/question was the reason I joined. I have not read much in terms of group posts, but I wonder if the topics that I need to address are even "site appropriate." The marital relationship in a nutshell . . . I always say to myself "we are too young for this!!" This phase of our lives came so prematurely. You and I are probably in slightly different situations in that I am the female caregiver and you are the male caregiver. One example that would come time mind: My husband's identity as a "man" presents challenges. While most married people claim to be best friends, I say that people would not be 'married' if friendship were all it was about. And I am not just talking sex here . . . I think you know what I mean. So, I am just telling you that I SOOOOOO FEEL YOUR PAIN - so much that it made me cry just reading your entry. I dont know how this site works - if it is possible to write things offline that are necessarily broadcast to the larger group. But, I feel like there are very few resources out there addressing what stroke does to the marital bond/intimacy. I sometimes wonder if younger people can even stay married - as it appears that relationships become more platonic as time passes as this hideous condition robs us of the very essence of that special bond between man and woman. Anyway, hope that was not a total buzz-kill. Just letting you know that I personally know exactlly what you are going through. Nectari, Richmond VA
NLavie, January 16, 2019 1:47am EST
Vegas, just read your post. I am not close to go there yet, but I think this is a topic that needs to be addressed openly, thoughtfully and seriously. Maybe there needs to be a separate group targeting young "strokesters" (my husband's term for survivors and caregivers alike). I need to read more posts so I am not talking out of my ass here, but I think we are all on the same page re the pain of a marriage stricken by this condition. Nectari
Kdogg240, January 16, 2019 12:00pm EST
My name is Kevin, my wife had a clot which caused a hemorrhage which caused a major stroke on may 9th 2016. We were both very young she being 37 and myself 39. We also have a little son who was only 14 months at the time. She was hospitalized for just under a month and sent to inpatient rehab for 3 weeks. She was left with servere aphasia,and the ability to read or write or speak or comprehend,but did regain the use of her right side of her body. She is able to do some physical activities, but daily tasks can sometimes be a problem due to the up’s and downs of recovering from a stroke. I am now her full time caregiver, and I struggle with a lot of things you described in your post. Feeling alone is the biggest problem. It causes frustration, stress, and sometimes even anger. There is a fine balance in helping the one you love and also helping or taking time for yourself. I don’t get a lot of time for myself, raising a young child who can be difficult sometimes and who doesn’t really understand what’s going wrong with mommy. I’ve always tried to explain everything to him, but he is just to young to really grasp the magnitude of everything. Family can only help so much, as other people move on with their lives and tend to take a back seat to the victims recovery process. We found a support group for survivors, but not really for caregivers. I have finally found this site and hopefully can find more people like you to have somewhere to turn to for support. If you would like to ask me anything, please feel free. If you ever wanna just talk, let me know. I don’t get a lot of time, but I’m sure I could make some if needed. Best regards to you and your family.
Vegas, January 16, 2019 3:36pm EST
Totally agree an indepth conversation is better on a facebook group chat or something I'm just putting the idea out there so people don't feel so bad about their feelings. I kinda had a similar conversation with Yarn007 in the heart caregiver section on June 21, I had my stroke due to an open heart surgery so it applies to them to. With physical support groups people can become very close sharing, crying, comforting and holding each other, it's a real relationship with everything except the 1 big thing that everyone gets hung up on.
I almost think it would be easier as a female caregiver because most guys would be okay with adding another female and if he is busy with someone you can be busy with them or in another room busy with someone else. fair is fair. There are all kinds of safe options.
You should probably be involved with the lady / couple selection because some females will try to take advantage of a disabled person. I get they are trying to survive but he still shouldn't get robbed. I think if people are honest most long term relationships involve more than just the partner.