Missing my husband

[Mrs. Simons]

Hi,

Husband had stroke 2/17 he is still in the hospital while we wait for an open bed in a long tern rehab facility that is closer to our home. I've been very busy applying for assistance, social security, and insurance etc. while also taking care of our three daughters, and attending college. I dropped all but 1 of my classes and hope to go back to school in the fall. My husband Jeff has been a trooper--he communicates looking up for yes& down for no. He has a trach, & feeding tube but his systems are all working and he recently has started to swallow . I know that dosen't sound like much but I tell him daily that every little bit helps.

 

Jeff is my best friend and that's why this sucks sooo bad. I miss talking to him. When I see him I tell him all about the girls and what we have been doing. I don't give him any bad news. Just the good stuff so he won't worry about us. I love him so much! Sometimes he cries when I tell him I love him and I know it's because he misses being with us too. Talking w/him is hard at times because it's like playing 20 ?'s and I feel like I'm not asking him the right questions and feel guilty that I'm not a mind reader.

 

Lately I see married couples everywhere and it makes me want to cry. Hope this goes away soon, I don't like these feelings and hate being alone. I have my girls but I can't talk to them about things like this. They have enough to worry about w/out worrying about me.

 

Please pray we find a bed for Jeff soon, maybe I'll feel better if he's closer to home and can have access to computer communication device so he can talk more on his own.

 

Just feeling lonely. Thanks for listening.

Mrs. Simons

 

 

[jriva]

 

 

Hi Mrs. Simons,

 

I totally understand the emotions you are going through. Your story is too common around this website. My husband's stroke was 5/21/2000 and he spent many months with only the word "yes" in his vocabulary and we've been playing '20 questions' every since. The guilty feelings in not being a minder reader is something that, I believe, most spouses experience when communication is taken away.

 

Starting to swallow again is HUGE and I'm happy for you both. You've got to celebrate those little gains because they do add up. Even almost 6 years out from his stroke, my husband still makes tiny gains in things he is able to do.

 

Hang in there. It does get easier to cope with as you get some of the major huddles behind you that to do with the financial end of holding your lives together.

 

:friends: Jean

[fking]

Mrs Simons, I hope before long, you can bring him home when he is recovered enough for you to be caregiver. That way he is with family and suroundings he knows.

 

Meanwhile, I pray for his strength and findind a bed at the facility soon.

[lmouat]

Mrs. S.

 

I am so sorry. It hurts a lot when such a drastic thing happens. My hubby is my best friend, also. He was in the situation you are in and he was scared, too. At least we are past the years of kids and are into grandchildren, so it is easier for us.

 

You will make it and so will your husband. I will pray for strenght and for just the perfect place to help him.

You can email me if you just want to talk.

 

Please, take care of yourself.

 

Keep well,

Linnie :forgive_me?:

[arogers]

Good Morning!

 

As a caregiver I can tell you that every little step your husband makes will be important to you - and him! My husband doesn't even realize how he has improved over the past year. He had rehab immediately after his stroke(s), and has taken about 9 months "off" since the therapists decided he had peaked. He has recently re-entered the world of rehab, and is once again making some significant improvements.

 

As you probably know, your world has changed forever. We who visit this site know your hopes and fears. What a blessing you will experience as you look around the site and realize somebody else has already experienced what you are - and good things happened to them!

 

My husband has experienced something called "emotional lability" which leads him to cry often. After a year, he seems to be getting a little better. But he's still real sensitive - and it mostly seems to be to others, not himself. (I think he's making up for 30 years of stuffing his emotions - but it isn't really that, it's just one of the way stroke has affected his emotions.)

 

God bless you as you travel our road!

 

Ann

[marlen]

MRS. SIMON,

 

MY STROKE WAS NOT AS SEVERE, BUT THOSE FIRST FEW MONTHS WERE HELL. WHEN I ASKED MY WIFE HOW SHE FELT ABOUT ME AND OUR LIFE TOGETHER, SHE TOLD ME AS LONG AS I WAS ALIVE, NO MATTER WHAT, SHE STILL HAD HER COMPANION. JUST BEING THERE FOR YOUR HUSBAND IS THE BEST MEDICINE IN THE WORLD FOR HIM. IT'S A LONG ROAD BACK, AND EVERY NEW MOVEMENT AND EVERY NEW SOUND IS A CELEBRATION. KEEP CELEBRATING WITH HIM.

 

BEST WISHES TO BOTH OF YOU.

 

MARTY

[4mom]

Wow you sound young. How old are you and your husband?

 

 

I kinda have been where you are, only it was my mom instead of my husband. My mom was only 55 when she had her stroke. Was your husbands a brainstem stroke? Is he locked in? That is what my mom's was and he sounds just like her. For several days after her stroke she could only move her eyes up and down. The doctors said that her prognosis was poor. She was on life support, trech, feeding tube, catheter...the works. It is like one day your life just comes to a complete stop.

I could not imagine dealing with this with kids and not having my husband to help me through it. My mom is my bestfriend as well. I stayed with her the whole time she was in the hospital and then at the rehab. hosp. It was the first time I had ever been away from my son for more than 1 night (he was only about 15 mos old). It was so lonely staying at the hospital day and night, but I couldn't stand the thought of her being alone and unable to communicate. She was so scared.

You could start a journal for him to log his progress. My mom has such a hard time seeing any progress. Her recovery has been so slow, but from where she was it is a miracle. I even have taped her some to show her. My mom also doesn't remember the 1st 2 weeks after her stroke. She knew everyone and everything but doesn't remember being on life support or any of it. I think it is a blessing.

Have you made a alphabet board and tried pointing to letters to spell things out if you can't figure out what he wants. You can also make boards with things wrote on them like pain, turn me, Need medicine, want wife, dry mouth, hungry. That really helped with my mom in the begining. My mom is still not really able to speak real well, on good days I can make out most of what she is saying. I know her pretty well though and she also tries to cheat and use head movements and I make her try and say it. (not in the begining but now, it has been 1.5 years) .

He is still in the very early stages of recovery unfortunately as anyone on here will say rehab is slow and never ending. Swallowing is a awsome thing to regain. Can he eat or is just able to swallow his own saliva? My mom wasn't even able to open her mouth on command for about the first 3 weeks.

Hang in there! I will say a big prayer for you. We were about 2.5 hours from home when in rehab and it did feel so good to come home. You both have long roads ahead of you. Try to rest when you can cause you will need your strength. Another suggestion is to participate as much as you can in his rehab. I learned so much that now since insurance has quit paying for rehab I can do it on my own, and to be honest she tries harder for me than she ever did for the therapists. It may also make him feel less alone if you and your family can participate in it.

One thing for sure is that a stroke doesn't only affect the victim, it affects the whole family. Everything is different from this point on. You may find down the road a way to say as others here have that in ways some things are for the better. There are alot of inspirational people here. Your husband may at some point be interested in reading some of thier stories.

If you need to talk or vent or have questions that I may be able to answer feel free to email me or pm me. I would love to help if I can.

 

Sending many prayers your way

Ruth

[kkholt]

Hi Mrs. S,

 

I was reading Annies response - and this section speaks volumes:

 

"As you probably know, your world has changed forever. We who visit this site know your hopes and fears. What a blessing you will experience as you look around the site and realize somebody else has already experienced what you are - and good things happened to them! "

 

In the first weeks/months after my husbands stroke, I was able to get through my days on the physical aspect of just having so much to do and get done. As my husband gets better and more independant, and in our effort I believe to get back to what we were comfortable with before his stroke - we have new challenges.

 

As the physical challenges of our days, are less, I find the emotional aspect of our lives almost overwhelming. I have found that communication and patience is essential to getting through this.

 

I accept our lives will never be the same, and as a result was telling my husband the best we can ever hope for is that when somebody looks at him, maybe they couldn't tell he had a stroke. But past that, WE both will always have the effect of his stroke; me emotionally, and he physically and emotionally. Our lives and our relationship became drastically different the morning he had his stroke. I am the eternal optomist and will find every possible positive aspect.

 

With all that said, one important aspect of our situation was the effect my husbands stroke had on our teenage son. We carefully did not let him avoid uncomfortable situations. When he spent time with his Dad in the hospital we tried to make sure it was with just the three of us, relaxing, so he could be in a safe enviornment, with his new feelings. We didn't request he be a part of my husbands rehab, however we did involve him in minor physical assistance with his Dad (like transfers). We didn't want him to be able to avoid uncomfortable situations, and we wanted him to know he was expected to help, but never as a "burden".

 

We all have to play the cards dealt us - and the support on this site is tremendous.

 

Best to you, Mrs. Simon.

 

-Karen

 

 

 

[SteveH]

Hi Mrs. Simons

I am 47 and had my stroke 6 mos. ago, for the 1st. 2 weeks i don't even remember anything that happened at the hospital, but one of the things I started to remember was my wife just being there and it made me very happy. Later she took me on little trips on the hospital grounds and that pleased me.

So anyway just be there with your husband and he will be more than happy with you, it really helps.

 

Steve