Heart & Stroke Support Group
Caring for a loved one with a heart condition or who's suffered a stroke? Get tips, advice, and support in this online support group for heart and stroke caregiving concerns.
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19 days ago
This is hard. I almost don't know where to begin, I am so overwhelmed. I am hoping that by writing this I can get someone to pass along a little info. A bit of background first: My husband and me are in our mid-50's, have known each other since childhood but went our separate ways at the end of childhood. Fast forward through 30 years or so through our respective adult lives and marriages and divorces. We have been together of 4 years married for 3. We love each other very much. His mother has always been a big part of this marriage because she lives with us. She is 85 and has end stage CHF. My DH has 2 older siblings, a sister and brother. The brother lives out of town but is involved where he can be. The mother and sister don't get on well and she is reluctantly involved, if at all. I have known all along what CHF would eventually mean for her. I researched it. I found out what it really meant. I love this woman and finding out what would eventually happen to her just broke my heart. Now, here is the weird part, or at least weird for me: These people are all insanely in denial. 2 weeks ago she got dizzy on the way to the bathroom, passed out, apparently fell against a wall and got a compression fracture in her L2 vertebrae. Found out her hemoglobin was low which is what caused her to pass out. Her blood pressure was super low when they took her to the ER. This stay in the hospital lasted 10 days. She looked so terrible and was so frail that I began asking questions of my husband about her end of life care. What plans were in place? What did she want fr us to do about her care? Did she want to die at home? When I brought it up he was shocked. He was shocked that I asked about it and had never spoken to his mother about it. My husband is disabled and cannot care for her. No one else will help so it falls to me. It blows my mind that they will not talk about this. She is very bad. She cannot catch her breath. Her hemoglobin should be at minimum 11 and it is down to 8 but dipped to 6 in hospital. Yet she says every day that she will live to 92. Can a person with CHF be in denial right to the end? Do I have a right to talk to her doctor about what to expect? She has always been very cagy about her care, lies to us about it, conceals things from us. It is really hard to deal with. She doesn't want us going to the doctor with her. Until she fell she was still driving. Now we have to stop her or she could kill somebody else. Until her bak heals she will be stuck in bed. But some day she will want to drive. Money says I will have to be the one to tell her, even though she isn't my mother. My dad had alzheimers. I took care of him for many years but we had help and a plan. this is killing me. It's like they were all hijacked by aliens or see some kind of different reality where people with CHF live forever. I think I am going nuts.
Grannys Z said...
about 1 month ago
I am at my wits end, my husband had a stroke August 29, 2016. We have gone through physical and speech therapy for 6 months. He has improved, he can walk to the bathroom with no help but he has been urinating in all the wrong places. My coffee cup...which is now a planter, a jug of canola oil I had set out so I could fry fish, imagine my surprise and disuct when I poured it in my pan and all I could smell was oily urine. I have a carton I save egg shells in for my plants well this morning I fussed at the cats for getting into them as I found a few pieces on the floor but then I found the carton in the kitchen sink full of shells and urine. This is driving me crazy, I don't have anyone to help me, our daughter lives close by but she will only help if her husband is there to care for him and that might be a few hours every other month. I can deal with hI'm calling me names and trying to hurt me, I know that is the stroke but the peeing in everything is so gross. Any advice would be welcome. Sorry for the rambling.
about 1 month ago
My dad had a stroke on wednesday night. He currently can not speak although he tries to. I'm just so confused because some of the drs say he doesn't understand things. And others say he does understand most things. My dad was pretty much homeless and the when he was found the estimated that his stroke happens around 12 hours earlier. He hasn't taken the best care of himself (drug use) but he still my dad and I want him to get better but I also don't know what will happen to him once he is discharged.
about 1 month ago
a year ago today my husband suffered a stroke. He is doing pretty well. He is really working on his balance, so he can walk alone, and his speech. i decided to look for a support group for myself. How do i turn off my caregiver role and be his wife? thanks for listening, Red
3 months ago
Hi my 93 yr old nan suffered a severe stroke on Sat, we have been told she is the last stages of life. She is totally nil by mouth (no food or fluids) its her 6th day, she is still trying to talk to me and i know she is aware. She has now picked up a nasty chest infection, her lips are split and very sore due to total dehydration. How long does this last how long do people survive without food or drink. We the family have been told daily that she is unresponsive yet whilst sat with her she will call out my name or ask me a question, today i noticed her shivering and asked the nurser for a blanket. As soon as the blanket was placed on her she said she was cold. To me this doesn't sound unresponsive. She called my name 3 times yesterday and today told me she loves her family. The hospital she is at has her on a ward, i'm so upset by this, we have been told she should be in a side room with peace and calm but there is no space. She is dying with people watching. I heard her tummy rumbling all day today and also kept moisten her lips as she is so dry her lips are split and sore. She can hear everyone else on the ward having there meals and drinks. I'm so concerned as she is still with us and knows the food and drink are there yet is not being given anything. She raises her hand to her mouth as its so dry, she is wanting water but the hospital wont allow it. This has got to be the cruelest thing i have ever seen. How long does she have to go through this? They have told us there was a option to bring her home to die but now we cant, she has to stay on the busy ward with everyone's visitors coming and going. Its undignified, and where we want to talk, privately to her we cant. Im so upset. x x What can i do xx
3 months ago
Help. My father has been to hospitals and rehab back & forth since June due to poor care and appartenly 2 strokes. We brought him home in August b/c we thought rehab care was going to kill him. He did ok at home even though he was 24/7 care and bed bound but could sit and stand. He was hospitalized again in Dec due to heart rate in 20s & 30s, were told he had a 2nd stroke. He's 79 and has a history w/ Lyme bulls eye rash. He has been in rehab again this time since Dec 15th. The care is okay, however the therapy is a disappointment.. Its not scheduled and there isnt a routine. The insurance is dropping rehab coverage. We are applying for medicaid and wanting to bring him home. I was informed home care medicaid is no different than facility medicaid. Then the social worker stated if we bring him home now medicaid will not cover his needed home care and we will be financially responsible. We're were informed he has to apply for medicaid facility in order to be able to bring him home, after 3 mos at the skilled nursing facility? He's suppose to be discharged tomorrow & I'm trying to figure this out and do know what information is correct. Anyone able to clarify? He lives with my mom and myself in CT. Not sure if we can bring him home or have to wait for medicaid to be approved, then bring him home...?
Susan W B said...
3 months ago
My hisband suffered a stroke in Feb 2016. I had this grand vision of him being in rehab for 60 days and then coming home. Well I had to realize that wasn't going to be the case so now I'm having to look at reality. He will neve be able to return home and will live the rest of his life in a nursing facility. Something that he always told me he didn't want. The guilt I feel is overwhelming and if I could go back different decisions would have been made. But since I can't I have to live with the decisions I made and the guilt.
3 months ago
My bother is 53. He suffered a stroke 6 weeks ago. He is in a IRF and thriving. They said his funding is up next week and I have to take him home even though his needs exceed my ability. We both want him to go to a SNF but he has no insurance. Social security/Medicaid pending. Can the rehab just kick him out even though he has no safe discharge??? Help!
5 months ago
I haven't been able to completely open any of the posts...I receive them, but since these sites were updated, I can't figure how to read any of them to the end. I click on 'see below', but I only get the beginning and nothing else. Please advise. Thanks, October
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