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It’s so unfair as we are both I think still young and at this moment in time we don’t have much of a life because his stroke has taken this from us. I don’t see anything getting better at the moment.

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Strokes are not exclusive of old people. There is a small but real treat of stroke in people under 50 years of age. Not all stroke victims are the same. All depends on the type and extend of the stroke and the area of the brain affected. Being young, the healing and adaptive abilities of the brain are better than in old people. You said that his stroke occurred two years ago and that it affected his cerebellum. After two years, most of the recoverable lost functions have already returned. Than means that there are some disabilities which will remain permanent. The seizure disorder is one of them. Unless he doesn't develop another stroke, he is likely to live many more years, but he will never be as before the stroke. You have to be aware that he will always need assistance and that he will never be able to obtain gainful employment. A friend of mine suffered a mild cerebellum stroke but after two years he had recovered most of his lost functions and was able to go back to work and even to play tennis again. Your partner's stroke must have been very extensive. At least, you should be glad that he didn't die but a full recovery is unlikely.
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I am caring for my older brother who had a brain hemorrhage and stroke. The doctors never told us about potential for seizures. He had a gran Mal seizure about 3 months after I took him home, and has been pretty well managed on anti-seizure medicines ever since(3 plus years). I take a break from him every two months, leaving town for a few days. Keeps me sane. I am paid to be his caregiver thru a program. You need to find time to take care of yourself.
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Look into skilled nursing. They can help a lot with care and give you a break.
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My LO also suffered from a stroke and was paralyzed on the right side. It is a very difficult situation for both of you to adjust to. It is very important that your partner go through with physical therapy and obtain any durable medical equipment (DME) necessary. Are you near a Rehabilitation Hospital, like Shirley Ryan Ability Lab in Chicago? Can you travel there? Please note a custom made wheelchair as prescribed by a physical therapist professional is always better than a store bought one. The younger and more motivated a person is, the more likely the person will better teach the brain how to reuse his limbs. Your partner will need you more than ever. I hope insurance coverage will help pay for the necessary physical treatment and DMEs. Also check if insurance will cover Home Health Care Occupational and Physical Therapy. If not, look into Medicaid and Social Security Disability Benefits. If you have any specific questions please private message me here on the forum. Your probably need to procure Adult Diapers. Check eBay.
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It takes a lot of patience and you will get some help on understanding on how to deal with this and you first have to take of your self first if you don’t it will be harder to take care of your partner
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1. Both you and your partner need to give yourselves time to grieve. Your dreams and expectations about life have radically and abruptly changed. There is no right way or wrong way to grieve—it is very personal.
2.Just as he needs time for himself, you need time for yourself. Before the stroke you did things together and separately. The same rule still applies. My dad had a series of strokes and he flourished best when I took care of myself. My physical, emotional and psychological well-being had a direct impact on his well-being. If I was down, he could sense it and if I was up, he could sense it. This does not mean you have to be perfect and happy. False cheeriness can actually be detrimental. What I am saying is take care of yourself first so you can be there for your partner. Go out with friend, make time to enjoy your hobbies and activities. Seek counseling or groups at your local hospital that help families facing a major health crisis or find spiritual renewal in the way that works for you. My brother likes to attend Mass, while I turn to nature.
3. I had the opportunity to work with a group of medical students at our local teaching hospital on end of life care and how it impacts both the patient and the family. (I am not implying or saying your situation is end of life care.). I learned an important lesson from this opportunity. Everyone needs a goal to achieve or look forward to. My dad was on hospice with dementia and he was clearly declining. His 90th birthday was approaching, so that became the main goal. The minor goals were the upcoming events in the near future—my daughter’s fifth grade basketball games, a holiday, a family member or friend coming to visit. My dad, who was a heck of an artist, joined my daughter at the table and did art projects with her. She doesn’t have any siblings, but sure has happy memories of my dad’s silly drawings. These goals made him feel like an important member of the family.
4. Be kind to yourself. You are doing your best. Accept that you are going to have victories and failures. That you have found this forum says you are doing your best, that you are willing to put yourself out there for your partner. This is clear to all of us.
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You want to try to be a part of an in person stroke support group closest to you. If there's not one close enough, then you might want to try an online group for caregivers. Also, you might want to consider hiring part time or full time in home help so you can get a break once in a while. I'm sorry that you had so many things you wanted to do. I would also pray to God to help you during this time.
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Sunshine12345: Imho, perhaps you can locate a stroke support group near you. My late mother suffered an ischemic stroke at age 94.
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I have been taking care of my husband after he had a stroke 17 years ago. I believe it's the hardest thing I have ever done. I know you are going to have to be strong for your partner. I will keep you in my thoughts.
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Momheal1 Nov 2021
I agree - it truly is the hardest thing I have ever done. It can break you somedays. I hope you have had good people on your journey as we need them. 🦋
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I had a stroke at 47 and another at 49. It is hard for both the patient and the spouse. Depending on how severe the stroke is,there may be hope for recovery. I was in rehab for 3 months with my fist stroke. I pray for comfort for you during this time. Your spouse may go through a range of emotions. The best thing you can do is just be there. Don't try and make things better. Help your spouse live with the new reality. Most importantly, find a stroke support group.
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Find yourself support whether its a stroke support group (preferable) or private therapy because in order to help your hubby you need to help yourself. Caretaking is HARD, you two are so young to be burdened like this. We are here for you on this forum but I think you guys can both benefit from more emotional and mental support. You don't talk about your financial situation but if you could afford it, get some in-home help too. You'd be surprised at how this will help your mood and free up some time for you to do something that brings you peace and pleasure. Learn everything you can about post-stroke care - p/t is essential and can often bring about great improvements. Get 2nd and 3rd opinions, one doctor does not necessarily have all the answers. It's never too late! God bless you.
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My father in law had a dense stroke in his sixties. At first he could only move his eyes. After a month in hospital I wanted to take him home and set up the help we needed, my mum in law had already moved in with us, The first big problem was his depression and the will to live. We encouraged him and showed him how important he was in our lives, We bought a chair that helped him stand and a bed that raised and lowered his head or leg areas. Gradually he got more mobile, we were urged to make sure he was stimulated we bought a sheepdog puppy and told him he had to help train it, calling her, teaching her to fetch and sit. That brought him such joy. I learnt all about physio for him. how to lift him etc etc.. It was hard work and without the support I had I doubt I could have done it. You can not look after them day and night dont even try, My father in law lived a further 7 years eventually being able to walk with assistance. The brain is marvellous the way it makes new pathways.. He used to get mad with me,, I made him hold bags of frozen peas in the paralyzed left hand for a few minutes throughout the day,, he hated it so I used to bet him how long he could hold it for and he had to pay up,, or me !! It is really hard but we loved him and just didnt want to lose him,, But,, dont try it without help,, or you may pass before he does
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tfalohun Nov 2021
Wow these are such creative solutions!
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My father in law had a dense stroke in his sixties. At first he could only move his eyes. After a month in hospital I wanted to take him home and set up the help we needed, my mum in law had already moved in with us, The first big problem was his depression and the will to live. We encouraged him and showed him how important he was in our lives, We bought a chair that helped him stand and a bed that raised and lowered his head or leg areas. Gradually he got more mobile, we were urged to make sure he was stimulated we bought a sheepdog puppy and told him he had to help train it, calling her, teaching her to fetch and sit. That brought him such joy. I learnt all about physio for him. how to life him etc etc.. It was hard work and without the support I had I doubt I could have done it. You can not look after them day and night dont even try, My father in law lived a further 7 years eventually being able to walk with assistance. The brain is marvellous the way it makes new pathways.. He used to get mad with me,, I made him hold bags of frozen peas in the paralyzed left hand for a few minutes throughout the day,, he hated it so I used to bet him how long he could hold it for and he had to pay up,, or me !! It is really hard but we loved him and just didnt want to lose him,, But,, dont try it without help,, or you may pass before he does
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Don't give up. My grandfather had a stroke at 70 and through our efforts at physio etc he walked , talked and was fairly good for 20 years until the second one took him down. I know this doesn't sound hopeful but not all strokes are equal and papa was so much older than your husband , youth could be on your side .
Talk to the Dr in depth and see if physio therapy , meds and speech therapy will help .
If you have done this already and it's grim , though it's beyond rough , remember this is the " for worse " and " in sickness " part of your vows . It's not easy to see a loved one suffer but try your best to be there for him and make him as comfortable as you can .
If it's too much for you , see what can happen with home help , a part time nurse or a physio therapist. As bad as you feel , if he's still able to know what's happened to him , imagine what's going on in his mind . It must be devastating .
Try your best , stay positive and investigate the terms used by the doctor (s) and see how he can come back from this if he can.
I wish you both luck as I've been there .

L
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My husband had a devastating stroke at age 53. It was really awful, full paralysis left side. Lost his health care until he eventually qualified for VA coverage. Finally after 3 years he had a second stroke which took his life. It was an awful time for me. I understand fully what you are going through. If you can get help in, depending on his disability, to help with bathing, toileting, etc. that would help. My husband qualified for twice a week, two hours. They bathed him in the shower which was a huge help. The poopy diapers were the worst. But I got through it and you can too. What doesn’t kill you will make you stronger. You may one day need that strength like I do now with my 92 yr old mother!!
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My dad had a stroke at age 42 while we were decorating our Christmas tree; I was just 15. My Narcissistic mom just thought he was 'tired' and told him to Sit Down. I knew immediately something was very wrong. He wound up hospitalized for a short time and then lived to only 65. His right side was affected, his dominant side, and it got better but he was limited in activities. He was advised the blood-thinning meds can make a person depressed, so he went into counseling, something rare in those days but such a godsend for him. Of course you were shocked to hear about other issues that may come with stroke, so I'd suggest you sit your partner's doctors down and tell them you need to know EVERYTHING that could come along; and educate yourself on your own as much as possible. My dad adapted to his stroke effects, and had a pretty good quality of life, could travel, garden, putter in his workshop even tho he had two heart attacks after the stroke and a massive heart attack took his life at way too young. I'm not sure my folks were careful enough about diet and certainly not 'exercise' after such a 'wakeup call' of cardiovascular disease. Do EVERYTHING the doctors advise, PT, diet, etc.
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My SIL had three small strokes following a brain bleed from a cerebral aneurysm. Fortunately, her personality and thinking were left intact, but her vision and right side were impacted as well as her speech to a lesser degree. Depression was the BIG battle. This beautiful smart woman, full of life, independent, working a job after seeing her oldest start college, was reduced overnight to someone who needed help getting out of bed and feeding herself just three months past her 42nd birthday; it didn't help that her mother had died from an aneurysm just 6 weeks before.

She viewed her life as over. I had some of the hardest battles of my life trying to convince her the years ahead were worth living for. My brother still needed her; the love of his life and wife of 26 years. Her boys were 19 and 17, they still needed her. The years ahead would have their marriages and grandchildren. Slowly, she won the battle with depression and started to really apply herself to PT.

She learned to walk again with an ankle brace. Her speech returned to almost normal, with her occasionally needing to think a moment before she could find the word she wanted. Her vision would remain reduced but she would eventually adjust to enough to position a television just where she needed it to view her favorite baseball games. Depression was still a battle but she soldiered on.

Then she became truly needed. Her father was diagnosed with cancer. She started cooking and doing his laundry and sitting with him during treatments. She started cleaning up his kitchen, then started doing other household chores, mostly from an office chair she used to move around indoors. Shortly before her father's death, her first grandson was born and the battle with depression was over. She started joining me for babysitting duties on the weekend and when he was about a year old, she started babysitting herself during the week. She never looked back and had a full life for the next 14 years until a large stroke would take her quickly at 58.

There were accommodations; life was never the "same". She had a dialer that called numbers in a specified order when she fell or needed help. It started with her husband, then the close neighbors, the other family members, and then 911 (if no one else responded). The dialer allowed her to be left alone again; my brother returned to working in his garage because he knew if she needed him she only had to press a button. I was one of her "drivers" who responded to a phone call and took her shopping or to her favorite seafood restaurant (which my brother did not favor) or to a grandchild's event. I delivered her grandchildren for visits and would take everyone out for ice cream. Life was never the same; in many ways it became better. By the time she died, her sons had grown into men with wives and families of their own. Six of her eight grandchildren would carry vivid memories of her and the youngest would have photos of her holding them. This is the time of the year I miss her most; my partner in scheming Christmas presents for her grandchildren is missing.

I'm sorry you seem "stuck" in the very hard adjustment and rebuilding period. I hope your story has the same good quality of life returning my SIL's story had. I think at some point, we have to accept things will never really be as they were, but we need to make "now" as full as possible. My brother found it really hard to leave his wife alone again. He went out on an errand, leaving his wife in the bed with a headache, and came home to find her unresponsive in their bed and covered with vomit. When he became able to "allow" her to live her own somewhat independent life again, their started finding their own new "normal".
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Sunshine12345 Nov 2021
Iam actually crying so sad I feel awful as there is people worse off than me and I feel awful I feel like I’ve just gone on when there is people worse than my situation but it’s been good to talk
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Sunshine where are you located?

I am so sorry as you are both so young and a stroke most certainly turns everyone’s world upside down.

My mom was immediately put on anti seizure meds - then weaned off after 6/9 months - she is since back on a low dose (as I notice some small seizure activity when she has a UTI ) and does have regular EEGs. The seizure meds can make them tired in the beginning (my mom did balance out on them but I give it to her at night - if she has an infection she gets it morning and night).

Most all stroke survivors have personality changes - moods - anxiety and depression. If he isn’t on any meds for depression or mood changes I would suggest speaking with a neuropsychiatrist and even a neuropsychologist. My mom actually didn’t start one until over a year in and it did take trying a few different ones to find the best one for her. She has recently started talk therapy with a neuropsychologist and will be starting neuro cognitive classes - (they help with so many post stroke issues). Our next step is to get her in a stroke support group - she tried one early on but she had too much other stuff to focus to get much out of it and then we all went into lock down. A stroke support group maybe be good for both of you - as a caregiver also need a place of support.
I would ask his neuro about meds for moods and or depression or a referral to psychiatrist.
Mom does continue PT and OT in home and we are hoping to get back to outpatient soon. They need a schedule with therapist as my moms motivation or commitment does not come naturally anymore - she has to make notes and force herself to remember to complete things - that is why is it good to have others involved to keep them on a schedule. She has great intentions and wants to do them but her follow through just still needs strengthening. The neuro cognitive classes will also strengthen this stuff.

My mom is older and needs help with all aspects of care - I know how exhausting it can be - how lonely it can feel at times and how difficult it is to adapt to the new parts of their personality. But don’t give up. There are so many things the brain can continue to heal from - getting him mental health therapy - and maybe a medication to help with the moods will help him going forward. Even seizures can be exhausting for the brain and affect moods. Hang in there - your not alone.
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Ricky6 Nov 2021
Dear Momheal1. Some of the concerns you cited about stroke patients such as, personality changes - moods - anxiety and depression, etc. reminds me that stroke patients can suffer from vascular dementia which is like Alzheimer’s Disease, but caused by the stroke.
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Every stroke is so different. My mom was 71 and independent and running her own business. She has a large stroke on the right side and has left side hemiplegia - cognitive deficits - left side neglect - and has had so many different issues from executive functioning - to processing - mood - memory etc etc.

When did he have the stroke - was he able to receive TPA? What challenges are you struggling with?

Stroke is a long recovery with so many parts involved. Give a little more info and we would be glad to help with anything we may have learned.
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Sunshine12345 Nov 2021
Hi my partner had a cerebellum stroke so his balance is off he can’t walk very far without falling to grab something he’s had physio but nothing works his moods are just beyond bad never know when he’s just going to to flip and a few weeks ago he had a post stroke seizure we never was told this would happen by the stoke team so this seizure was such a shock to me as his stroke was two years ago I talked to a neurologist yesterday and he’s giving him some meds for seizures which has really annoying me because his stroke nurse never said anything about seizures it was awful and such a shock me thanks for listening .
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Can you be a bit more specific about what difficulties you are finding hardest to adjust to? There are so many possible deficits involved with a stroke, from aphasia and the difficulty trying to communicate to mobility issues. What type of stroke has your partner had and what currently does he suffer from in terms of deficits you both have to deal with? How long ago did he have his stroke? What rehab has he had, does he continue to have? What sort of care does he rely on you for?
If you are able to access Netflix there is a wonderful documentary called My Beautiful Broken Brain about a woman, 30s, status post hemorrhagic stroke.
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Sunshine12345 Nov 2021
Hi it was a cerebellum stoke thanks for your reply really appreciate it and I will look on Netflix for the program thank you
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I helped care for my mother after her strokes, especially a large one that did devastating damage. Her care needs surpassed what could safely be done in a home setting, she lived in a NH, but that certainly didn’t take away from the caregiving need. Find out what is expected in terms of recovery and long term needs, you’ll have to decide if this care is doable by you and in home. And know that depression is very common after a stroke and needs treatment, that’s one area we could have done better
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My husband had a massive stroke at the age of 48, when we were married just a year and a half. He lost his ability to walk, talk, read, write and use his right arm. After much therapy(speech, physical and occupational)he was able to walk with a brace on his leg, talk short sentences and simple words, dress and shower himself with his left arm/hand, but never regained use of his right arm/hand, or never could read or write.
I was told at the time that my husbands young age at the time was to his advantage, as your partners age should be for him. Just make sure he's working very hard in all their therapies, and that you're not doing things for him that he should be able to do for himself. He will have to relearn how to do things his own way, and you certainly don't want to interfere with his progress.
It's hard I know, but eventually you both will adjust to your "new normal" and life will go on.
It doesn't sound like you're married, so realistically you may end up realizing that it's not something you're wanting to deal with for the rest of his/your life. Only you can make that decision. I was married to my husband, and knew that he needed me and I loved him very much, so I stuck with him to the very end, which was Sept. 2020, when he died at the age of 72.
I wish you both the very best, and will just encourage you to make sure that you're taking care of yourself along the way as well. God bless you.
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Sunshine12345 Nov 2021
So sorry about your husband it’s really sad but your answer is so lovely and iam just hoping things will get better he is just waiting for some meds because he had a post stroke seizure two years after his stoke which was so scary for me as no one told us this could happen and it was such a shock for me seeing him like this. It’s so unfair as we are both I think still young and at this moment in time we don’t have much of a life because his stroke has taken this from us I don’t see anything getting better at the moment and now he’s had a seizure it’s taken us back not forward for his recovery iam so pleased I’ve found this site to be able to talk to someone as it help stay healthy and thank you
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