Newly home from hospital

Good morning, I am so very sorry that you both are having to experience this. Please know that we are here for you. I can share the information we have regarding caregiving post-stroke to help provide you with help and support.  While the doctors are right, it is more of a marathon than a sprint, it is a very long marathon and we are here to listen and support as needed. Best Katie

Hi Lobsterlover. I completely relate to your story. My husband survived a massive stroke a day after his 51st birthday. It was incredibly stressful, sad, lonely, and terrifying. He was very much like a child again in every way. I also had kids at home who were completely traumatized from the whole experience. I instantly became caregiver/wife/mother/only adult in the room, and there was nothing anyone could do about it. The medical community will only say vague platitudes--every stroke is different; once you've seen one stroke, you've seen one stroke. 

We were fortunate to have our neurosurgeon who gave us our only sliver of hope for recovery. He said "those who want it most, recover best." We wanted it most so we discarded any limitations and decided to make our own future. Recovery requires commitment to recovery. It is a marathon that we continue to run, even after 12 years.

I don't usually write about this on this site but you are too much like us not to mention: I wrote a book about our journey and I think you would find it helpful. It is on Amazon (Painful Blessing by Jill Krantz Viggiano). I hope you read it and find it helpful.  I hope you write again.

Hi LobsterLover,

I'm so sorry to hear that you're having a difficult time!

Although your husband might have started to re-learn the sensations that accompany the need to visit the toilet, the staffing levels at the hospital he was in may have made it impossible for someone to help him get there in time.

Has your husband started in-home occupational therapy and/or physical therapy, or is he scheduled to do that? Since toileting is consitered an "activity of daily living," it might be helpful to bring this up with his occupational therapist. These folks are accustomed to awkward conversations about ****** functions, and you can use whatever language or shorthand you're comfortable with (whether that's "***** and bladder" or "poop and pee" or "number 1 and number 2"). If you don't have something like that yet, talk to your husband's doctor about it. These agencies can also provide access to other useful as-needed services. The company providing OT and PT for my grandmother also has nurses, social workers, a specialty mental health nurse, and a 24-hour nurse hotline for medical questions.

My grandma who had a hemmoragic stroke in April (like you, the doctors gave my family little information about what to expect), and I'm one of her primary caregivers. One of the things I've noticed is that she often tries to "hold it" as long as possible because she doesn't want to bother us. Of course, "holding it" makes an acccident more likely, but the only thing that can be done in this situation is to reassure the person that it really isn't an inconvienence to help them when they need to toilet. When my grandma apologizes for waking me at night, I simply say, "Grammy, this is literally why I'm here at night."

About feeling like you have a baby again, don't beat yourself up for feeling what you're feeling. Caregiving is difficult and exhausting; sometimes it's sort of gross and nasty. Anyone who says otherwise is full of ****. You're allowed to get frustrated, angry, and upset. This online group is a good place to come and vent. Most of the people here are busy with caregiving, so there may not be anyone immediately availible to reply. You can still come here and post if you need to get stuff out. I'm still kind of new here, but from the posts and replies that I've read, this seems to be a safe space where it's okay to say what you're really feeling.

The most hopeful thing I can suggest is to do a web search for the word "neuroplasticity" and read or watch some videos about the amazing ability of the human brain to build new pathways and reconfigure itself after a stroke or other injury. It takes time and lots of work, but there is hope.

Hi Lobsterlover,

There is always hope, even more when it seems the darkest. I get happy when I can tell our children my husband is improving as fast as a frozen snail in Antarctica, but it's still movement in the right direction. You're husband will never just wake up one day and be healed, but every day moving forward is a reason to celebrate. The fact that he has the ability to move, and walk is cause for joy. My husband is bed and wheelchair bound, he can't use his left side at all. He had his fourth stroke at the end of January, he was not expected to live and I was given the option to pull the plug after 2 weeks. I didn't, he came home in May. I am his sole caretaker, and yes IT IS EXHAUSTING!! I can see the small improvements every day and celebrate those small accomplishments with him just so he knows he is getting better. He turned 58 in February and he wants to get better. It doesn't matter what doctors tell you, they can not account for the human spirit and willingness to not only survive, but thrive. Your life will never be the same, but you will find strength you never realized you always had. Keep encouraging your husband and help him. It does get better, but like everything else you have to put the work in. To help keep yourself sane, take time to do things you enjoy, listen to music, take up painting or gardening, go for daily walks just to get away for a few minutes. It really does help. YOU ARE DOING GREAT, KEEP UP THE GOOD WORK!!

No it doesn't get better and taking a short walk doesn't help either, because in the back of your mind you know it starts all over again as soon as you walk thru that door. It has been over a year and he is still in men's diapers. I am sorry but every day I go thru the same routine and even with day care there is no life for me and my husband. I am nurse, caretaker, 3 meals in bed and nanny, 

Hello!  This is actually my first reply to a post since just joining.  I am a daughter and caregiver of my father, who suffered a massive stroke, rehabbed and then the original stroke clot broke off again which caused the entire process to be repeated.  It is not easy.  It has been 4 years and many days I feel like I am barely hanging on.  I have struggled with frustration and annoyance and feeling that caring is such a burden as I am young still.  I feel like it has cast a shadow over much of my life, which is so difficult.  I love my father and I am so thankful that he is as functional as he is, which is a tremendous blessing.  Caregiving changes you in ways that you don't desire at times.  I would suggest you get him in with an acupuncturist as soon as possible.  That helped my dad tremendously.  Also, play music, lots of music...that aids in healing.  Constriction therapy is wonderful as well.  I would also suggest Unique Wellness diapers.  They are the best and if at night, I put the Unique Wellness brief on, then put a cheaper side tab diaper over it and a pair of rubber protective pants, he is able to sleep through the night without being changed, which is such a blessing for everyone.  I will pray for you and for your husband!  Sometimes, you have to remind yourself that you have to learn to love a different man, because he is not the same man that was your husband before...he is different and so are you.  It is okay to feel a total range of emotions throughout.  Allow yourself to feel everything that you feel, anger, frustration, grief, remorse, whatever...until your body is able to move forward.  Blessings.

Hi Lobsterlover! Awwwweee dont feel robbed. I am 28 yeard old mom taking care of my 43 year old mom. she had multiple ischemic srokes. she was intubated for a whole month and doctors told me to prepare for the worst. Here i am living on a 3rd floor apartment with my son and mother. barely able to get out because she cant walk by herself (not even with a walker). she feeds herself, (a little messy but its ok) we dont have anything handicapp accessible. so showers are difficult with me weighing 107 and mom 165. but i really do make the most of it. its month 6 that i have been taking care of mom. it gets better. i mean emotionally for me i have learned my strength, i am very young and i should be out partying lol. but god called me to do this. I have days where i just cryy all day. then ihave the happiest of days. greatful days. i always think someone has it harder than me so i need to be greatful.

I'm in this 2 years now after my wife had a massive stroke. She's slooooooooooooowly improving but I don't have my wife nor my life. Really.

We will never communicate like couples do.

We will never have independent lives.

I will be taking care of her forever.

We will never...

We're all happy she's alive.

I'm exhausted.

Guess what I'm saying is thankfully he's alive and it'll be a huge life adjustment.

No sugar coating this.