ErinLynn42
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ErinLynn42, July 15,  2019  4:58pm EST

Looking for patient with similar experience: hemorrhagic stroke of cerebellum

Hello,

My mother (age 66) suffered a hemorrhagic stroke in her cerebellum in December. She had an ischemic stroke (and subseqent surgery - endartarectomy) two months prior in September 2018. After weeks in the hospital and about a month and a half in inpatient rehab, she was released to go home. She recently concluded a 3-day a week day therapy program and is down to one or two regular short PT sessions in a week. She can talk and walk, but is fatigued easily, a bit foggy, and extremely depressed and anxious and easily overwhelmed/overstimulated by noise. She gets around with a walker but isn't supposed to go out on her own. She had a caretaker for a while but not anymore. Her balance is an issue and she is dizzy nearly all of the time. Since her type of stroke was rare (hemorrhage in the cerebellum), she has never found anyone who understands what she has been through and what she is going through. The depression and anxiety are crippling, and therapy and antidepressants aren't helping. I looked into support groups in Chicago (where she lives) but what she really needs is someone who is able to communicate that experienced this type of stroke who might be willing to talk to her. I would be grateful for any responses or suggestions.

Thank you,

Erin (daughter)

7 Replies
  • AHAASAKatie
    AHAASAKatie, July 16,  2019  9:54am EST

    Good morning, i am so sorry that you and your mom are having to experience this. Stroke is truly life-altering and it is understandable that you are both struggling with this. I can share the information we have regarding life after stroke to help. Please know that neither of you are alone in this. Best Katie

  • JeffB
    JeffB, July 16,  2019  10:20am EST

    Erin,

    I am sorry to hear that your mother suffered a stroke. My best friend had a hemorrhagic stroke two years ago that affected the logic center of his brain. This is of course different than what you mom suffered but I saw your post and wanted to share a couple things.

    I became his financial POA and one of four caretakers for a while. It was one of the hardest things I ever did. Taking care of someone is a massive effort. I did my best though. He lost his ability to write, his desire to do things, he was left in a situation where getting up and walking across the room winds him, no one has diagnosed him with depression, but I know he is locked into a fierce struggle. He just can’t interface and relay that level of emotional detail anymore.

    But yeah, two years in now. The thing that helped me was that I keep telling myself I am doing all I can do. That and to accept the person who he became for who he is. I push him occasionally and provide long term goals but if he misses them it’s OK. All you can do for your mom is to let her know you love her. Try to get her the care she needs. Listen. Be present. But also give yourself some space as well. This is a loss for you as well. She’s not gone, but she’s most likely going to be a different person at least for awhile.

    I know this does not really answer your questions. I suppose I just wanted to say that I understand.

    I wish you and you mom the best outcome possible. Don’t give up hope but try to take a flexible approach and accept what comes as it unfolds.

    Jeff

  • ErinLynn42
    ErinLynn42, July 16,  2019  11:55am EST

    Thank you both. Still seeking a support group where there is someone who is in a similar situation to her that she can talk to - she feels no one understands what she is going through.

    Erin

  • ladyj8173
    ladyj8173, July 16,  2019  5:34pm EST

    Hi Erin and Mom,

    I'm a 58 yr old female originally from Chicago, moved to CA 30 years ago.  You're doing the right thing reaching out to share your experience.  Please know you are not alone and finding a person or group for support and guidance can be challenging but oh so rewarding!

    I had an ischemic stroke on my right side, back of the skull (occiput area) Dec 2016.  Lost vision in my left eye and could speak, walk with a cane, and still drive a car on local streets.  I was confused and had to take an afternoon nap every day.  My vision eventually returned and walking improved, but I still used a cane because I sometimes felt unsteady.

    Had an MRI and learned I had cavernomas (small blood vessel abnormalities that look like raspberries) throughout my brain, abnormal brain shrinkage for my age, and some dementia.  

    April 2018, I had a hemorrhagic stroke on my left side near my brainstem.  My entire right side was paralyzed and I had 4 weeks rehab in the hospital.  I can walk with a cane or walker, have difficulty speaking, and am often confused and have poor short term memory.

    I started going to a local support group since my 2017 and am so glad I did.  In that group, I was able to connect with:

    1. other YASS (young, adult stroke survivors 18-65)

    2. a man who had also lost sight in his left eye who was so happy to have finally met someone who had similar vision experiences

    3. other female Asian stroke survivors

    4. a man who wanted our feedback as he was inventing tools for survivors

    5. a woman in a wheelchair who was learning to say "hello, how are you?" in different languages so that others would feel more comfortable around her

    Finding a place to share my challenges and feel so much support and positivity helped me feel less alone and down about my situation.  You can try different support groups to find one or two best for you. https://www.strokeassociation.org/en/stroke-support-group-finder

    Best wishes,

    Judy

     

  • ErinLynn42
    ErinLynn42, July 18,  2019  10:58am EST

    Thank you. I am going to encourage her to attend a group.

     

    Take care,

    Erin

  • Stuartt
    Stuartt, July 20,  2019  1:06pm EST

    Hey Erin. This is a rare type of stroke. I'm a 19 year old male. I also had a hemorrhagic stroke in my cerebellum. It's been about 8 months for me. Because of my age, I've mostly recovered. I've had a very atypical experience, but I had some issues similar to your mother.

  • Judywait
    Judywait, August 6,  2019  11:31pm EST

    My husband, 69 yrs, suffered a massive cerebral hemorage March 13 2019. They really didn’t think he would survive, but he did and is home now. It’s a new world. He was in the hospital for four months. After ICU the hospital sent him  to an awful acute rehab hospital before they would allow him back into the          hospitals Accut Rehab unit. The       interim hospital was just to buy time because he was critically ill. Breathing tube, feeding tubes, no memory, no balance. From the beginning everyone in the medical field stressed SNF or at least LTC. I was more insistent he would come home, and listened to no one. They told me physically and cognitively he would need 24/7 care the rest of his life. His quality of life is improving, but very slowly. We are grateful everyday that I insisted he would come home. We can carry on great conversations, laugh, snuggle, see children and grandchildren. He has no balance to speak of. I don’t know if he ever will. He can walk with a walker with a care taker holding a harness belt ( for short distances). Caretakers will cost me $150,000 a year. Not sustainable so I’m scared about what will happen. I have almost no support. I believe in a year my husband may be able to walk with a walker possibly alone. Cognitively he will never be the same. Lost impulse control, problem solving and has anger issues when he can’t understand things. I don’t even know what kind of institution could care for him safely. He lost a sizable piece of skull the the four brain surgeries, including a shunt for insephalitis. He can’t fall. It would probably be fatal. We make progress every day. But I have no idea what comes next. My girlfriends husbands have all said they’d rather be dead than this quality of life. BUT, my husband and I love each other and still have fun. We are very isolated tho. I can never leave him except for an hr. Grocery store trip even with hep. He misses me when I am out of sight. We have in house therapies and next month outpatient starts. No matter what happens, we go another chance to be together and love each other whatever time. I don’t know how to get help for myself. When frustrate I even yell at him. Then remember he is still a very sick man. Sorry I went in so long. This story has been building for awhile. My question is how do you send your loved one away when they would know what it meant and how can you afford home care 24/7 or even SNF. We saved money for emergencies. Medicare is wonderful. But in the end we can only afford for him to live for 5 years. Can someone help me?  I wish you all luck and peace and strength. 

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