HELP...very long post

[MrFritz]

Hi Robyn,

 

I think I can somwhat relate to your situation, as I am a gay man who has been with my partner for 16 years who suffered three strokes starting in 2004.

 

I think the most difficult part about us caregivers, is trying to "really" understanding what our stroke victim is dealing with. I mean, lets be honest, there is no blood and guts, you can't "see" where the wound is.

 

I admire your determination, and as hard as it is right now, I think you are doing the right thing and limiting your communication based on her wishes. Even though her response is not what you want to hear right now, I think, down the road, you are making the correct decision.

 

Stroke rehabilitation is a process of relearning how to perform daily tasks. It sounds as if she is well on her way to recovery if she would rather you not "see" her doing this. I think that pride is a hard thing to swallow no matter what our situation is.

 

A strong relationship will not dissolve because of a medical mis-step in life.

 

Take care and let us know how you are.

 

Steve aka Fritzie

[Robyn]

Sorry I've been away the last two days, gang! I fly back east yesterday morning...grabbed my kids and drove like a bat out of...well...you know...to get home tonight!

 

Thank you to the last three posters. I'm still in a pretty good place...better than last Sunday...but still struggling. I work at being present...and then suddenly I am drawn away by some godforsaken fear and it pulls at me like the ghosts from "A Christmas Carol"...clawing and needing... I find I have to beat them back to stay sane. But the "sane" times are longer than the "insane" times and I am able to quickly recognize when I'm going to a "not so good" place and bring myself back to the good things I know...that she loves me and I love her and our relationship IS strong.

 

Steve...thank you for your statement "A strong relationship will not dissolve because of a medical miss-step in life." I've been told I snagged the "last sane attentive lesbian" around when Jane and I got together!!! Even our straight friends have said they want a relationship like ours!!! So yes, I think we are strong and I think we will survive this. I am willing to accept what this gives us...!!

 

Pat and Bonnie...thanks for continually offering me the insight of a stroke survivor. I really seek to understand, as best I can, what she must be feeling right now. This board has really helped me see that and has helped give me some peace about everything. Thanks you thank you for continually reaching out!

 

I spoke with the case manager today from the rehab hospital from where she was discharged yesterday and she said that Jane had a smooth discharge and that she was happy to be going home!! That was all she could tell me but that's fine so I'm good with that. I'll call Sunday...it'll be more than 1 week since she asked me to give her some space and it'll be right before she begins outpatient work. It feels like a good time to call.

 

I've never been good with uncertainty...my skin crawls I am so uncomfortable...but this is my learning right now. How to wait patiently...how to trust in our relationship...how to be comfortable with the fact I don't have control over the situation, as much as I'd like it. I've just had a pretty stinky 5 years, beginning with almost losing my life on September 11th, 2001 so I'm wondering when the universe is going to finally realize I've learned all I need to learn for now...it has a WARPED sense of humor I must say!!!

 

Thank you again for your continued support...I'll be back tomorrow once I wake up!!!

[lisas]

Robin, :friends:

I'm glad you were able to talk to the case manager. I'm sure it eased your mind somewhat knowing that Jane was going home. Now she can move on and get ready to work hard in therapy. :Clap-Hands:

 

Glad you had a safe trip. I'm sure your kids were glad to see you.

[Robyn]

It did ease my mind. Now I look forward to chatting with her, even if its briefly on Sunday...I just want to hear her voice!!! I live for that right now...

 

So enlighten me folks...how does outpatient, as a rule, different from inpatient work. The inpatient seemed GRUELING where she was...non-stop all day...by 5pm fridays (ironically the last time we spoke) she was WIPED. I understand it all depends on her status upon discharge but is it EVERY DAY or a few days per week...just curious!

[Phyllis4732]

Hi Robyn, I was in 3 settings. 1) Acute rehab. More or less a taste of everything along with getting started on stairs, walking with a walker, the bar etc. 2) step down, Still live in but different things. Every session started with exercise when wearing weights. Then, sometimes we would place :beach ball with a therapist in the center, He would throw the ball to each person who would throw it back. It was placed where each patient needed work, (such as right side, left side, lower, higher. etc. Helped balance too.) Also side stepping to get in narrow places, curbs and any sort of thing that iwas needed. 3) out patient. I went 2 times a week, but it could have been three times. I learned to walk on grass; walk, come to a curb (it was a wood platform, up, a few steps and down. I had eye exercises because I had a balance problem; I worked on a computer to regain whatever skills I need - anything I requested to be able to lead the type of life I had and hoped to have again. I even practiced setting stock (I was a field merchandiser) The stock was mugs or small bottles of lotion fron those that are given to patients. So, could be 2 or 3 times a week, but may depend on what is needed and what that particular facility does, I guess they did a good job with me. I'm again a field merchandiser and also enjoy going online - oh and somewhere at that place, I learned to pick up "from my dog". I said I'd bring the real thing but they said they's use wooden pegs from and OT board.

 

Phyllis

[Robyn]

Thanks Phyllis...much appreciated.

 

Note my thread in "Relationships"...she has asked me not to make contact with her...it is heartbreaking...

[jriva]

 

At out patient where my husband went, they did not encourage anyone outside of the main support person for the patient to be there. They only had so much time and so much space and socializing with others during that time was just not done. It was just as grueling, the pace just as hard if not harder in order to keep reaching that bar set to keep your insurance payments coming. The only real difference is that patiences are strong enough to go home in between therapies.

 

Jean

[Robyn]

That helps Jean...thanks...

 

Robyn

[lisas]

Hi Robyn, :hug:

 

As far as Rachel's therapy goes, she attends 3 times weekly. Usually 45 minutes-OT, 45 minutes- PT, and 1 hour of speech. We go Mon., Wed., and Fri. Inpatient rehab for her was 4 hours daily, except Sundays-Day of rest!! It was harder at the time since Rachel's stroke affected so much of her body and mind. She was in a lot of pain-pain meds knocked her out, making participation difficult. The pain at that time was the nerve endings coming back.

 

Now, the problem is the muscle spasms and spasticity. Her arm and leg is very very tight. . I've talked before about trying 7 oral meds. Nothing worked. Botox possible next.

 

Everyone is so different in their deficits. Therapy varies according to your condition. :friends: Hope that helps.

[Robyn]

That does...I didn't think she'd go all day, I figured it was going to be a bit every day or a lot several days a week.

 

I think the plan was before I left and before I was cut off from info, that they were going to focus on PT and Speech...the OT would be OK. The plan was about 2-ish months but hopefully moving on to independence at her farm in Colorado no later than Christmas. The case manager, at the time, thought that was doable based on her progress which was AWESOME!!

 

Most of Jane's healing now is in the emotional I think and the speech stuff. As an academic, that would be a huge loss for her.

 

She needs to rest to get her head "unfogged" and regain some clarity...not an easy fete though I understand...

 

Thanks! :hug:

[kkholt]

Hi Robyn,

 

Rob went to therapy three times a week - and because we lived so far away, we would travel to town, stay for three days of therapy, and come home for four days. Like others on this site, he had two or three 45-minute sessions. He graduated from speech fairly quickly. His first order of business was to be checked out to drive again. That took about three months. They have some great ways to test your reaction time (and neglect) - to see if you are ready to drive. The place Rob went to also had a car, and one OT person dedicated to getting people back behind the wheel.

 

When you talk to Robyn's mom if you can find out her therapy schedule - and what type of therapists she is seeing, it may give you a clue to how she is doing.

 

-karen

[Robyn]

thanks Karen...unfortunately, Jane has asked me to not even contact her family...she feels like it is just too much pressure and it confuses her. She said she just wants to heal and contact me on her own terms once a month. It is hard and it hurts but I am respecting her wishes. I know she needs the time to get her head clear and return to a more healthy place. Aside from her PT and Speech, she is also getting psychotherapy and I know that her therapist will move her to a very healthy emotional place as Jane is ready. I've blogged about this and why I think she is pushing me away for now...this is OLD ground between us but I accept that right now she doesn't have the emotional tools to get past this for now. I love her...I'm waiting...!!