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There must be more like me....

dettgrfan1
0 Recommendations

I am my husband's care-giver. This unexpected duty comes with it's joys, as I participate in his recovery from a near fatal health episode, but also with it's trials and challenges. While we manage pretty well, there are those days where a little inspiration would come in very handy. I am hoping there are more people like me out there who would like to share their experiences. As my darling cannot speak, sometimes the only "conversation" I get during the day is through the computer. Let's "talk"!

Explore topics in this discussion:

Cancer Surgery Memory Lung cancer Atrial myxoma Stroke Seizures Stress

12 replies

beansy

I was my husband's caredgiver, when he would let me. We were married for 12 years. He came down with a cardiac condition called ideopathic cardiomopathy in 1987 and died in 1997. He was not a good patient, we had a wonderful son together, and Joe has suffered losing his dad. Caregiving or being the spouse of a man with a potentially fatal condition was awful. I was only 35, and then 44 when he died.

beansy

I loved him very much, but everything in our lives changed from the moment he was diagosed. Nothing;s been the same again, but I am happ now. I moved to Florida a ear ago, and I am alone all the time, except for a few family things, I like being alone, but I hate loneliness. I don't drive because I had/have a rare condition and was a brain surgery patient in 1959. I have many struggles of my own, and probabl wasn;t the best caregiver. I was mad a lot. I am not anymore.

beans

CancerFreeColleen

I'm my husband's caregiver, and he's mine. I had lung cancer, he had a stroke. He's regained some of his speech, but he still has a long way to go. I miss the small talk. It's usually not worth it to start a conversation, because it ends in frustration, with me not understanding anything he's said.

So much changed with his stroke. Those things that have always been a source of strength for me are gone. He's always had a way with words, and could help me overcome any obstacle, with just a few encouraging words. Or he'd hold me in his arms, and I knew everything would be alright. He can't do that anymore either.

His memory comes and goes, so the little inside jokes that we developed over the past twenty years are now lost on him. When I told him "that's kinda nasty," he should have remembered the hilarious encounter at the Jersey shore, and laughed with me. Nobody else ever knew what was so funny, but we did. It was one of many little secrets we shared. Sometimes he still remembers, but sometimes he just glares at me like I'm stupid.

I miss the various relationships we had with each other. I miss my lover, my friend, my teacher and student. I miss my buddy the most.

dettgrfan1

Thank you both so much for the replies. Emotions run high when unexpected situations like these are thrust upon us. Beansy, I admire your honesty when you admit you were mad alot. It's easy to get angry & you're not even sure what it is that is ticking you off-him, you, the situation, the doctors, the loss, the helplessness, sheer frustration...let alone the things that a regular marriage goes through! CancerfreeColleen, I can identify with you missing all those things. We had only been married for 3 yrs. when a tumor in his heart (atrial myxoma) exploded and changed our lives (and our retirement plans!) forever in 2006. We have to learn to wear many different hats as caregivers-some fit better than others! I give both of you alot of credit as I see you both have personal health issues to contend with as well. While my health is fine, I have had to adjust to the death of both my parents and my best friend during this. I know God doesn't give one more that he can handle- I just wish he didn't trust me so much! (credit to Mother Theresa on that one!)

GrandmaK

My husband had a major stroke about 3 years ago and it turned our world upside down. He is so stubborn and always doing for himself. I had to do everything for him, and I did not mind at all. It is called LOVE.
We had a problem..he did not like the fact that I had to do everything and he could not do anything...Me ...I could not take the stress he was giving me... Taking care of him was nothing but the stress that he gave me was too much and I would go off and cry. Eventually we worked thru it. I know it was so hard for him. We became better people because of this experience. We take care of each other. A year later he had take care of me.. I had to have a total hip replacement..We never know what is going to happen in our lives but it is always nice to have a friend. We all need someone to talk to. Things get to be too much to handle sometimes and if anyone needs a friend and you need to vent please..I am here..God Bless You All..

dettgrfan1

GrandmaK-I could write your letter. (Except for the hip replacement part-which, by the way you seem MUCH too young for!) I have to agree that we are better people and that our marriage has grown stronger too. My husband was the ultimate "man's man", before his health episode. He could run faster, jump higher, & outperform all his peers. It is precisely those qualities that have kept him alive today. Will he ever be the same man as before?-no, he actually is a better man than before, just in a wheelchair for now. And yes, it is hard for him to not be as able as he would like to be and it is hard for me to see that. But LOVE brought us together and LOVE will see us through. We thank God nightly for bringing us together. We may not be perfect, but we are perfect for each other! You can probably tell that we are in one of our"good" spells at this time! (-; Believe me, there are times when I do not have hearts & flowers dancing around! Thanks for your reply.

GrandmaK

dettgrfan1,
You are welcome..Yes, I am too young for a hip replacement. 50 yrs. young at the time. It was NO fun.
I also hate seeing my husband wanting and can't do the things that he wants to do but I try to keep his mind busy with other things. It does not have to be physical labor. Word finds, puzzles,etc helps me out and I can leave the room. My husband has a wheelchair but he can get around with it. We count our blessings and we have truly been blessed.

beansy

Where are you? You ok?

Beansy

AGINCAJUNSC

My husband of 34 yrs had a near fatal stroke 3 yrs ago too; he was only 57. He can walk with cane and brace and talk but that's pretty much it. He is not the same personality I married and that has been difficult to adjust to. His attention span is very short. Since I had to quit my job to caregive, I see no one except when I grocery shop or go to a Bible study...which are always quick trips. The isolation and loss of my marriage are things only another caregiver can understand. You ask family for help but they are not in a position to relieve you. There is never time for a break...even though you know about caregiver burnout. No one really cares how you feel, what you do, the struggles you deal with physically, spiritually, or mentally. Caregivers are just as handicapped as the patients they care for. Caregivers and patients are both just trying to survive from one day to the next.

pasgirlproudmom

HI MY NAME IS BARB, MY HUSBAND IS 44 AND JUST SUFFERED A MASSIVE STROKE. TOGETHER WE HAVE 5 KIDS. HE HAD THE STROKE 5/17/09, HE WOULD HAVE WENT BACK TO SLEEP BUT I NOTICED HE WAS TALKING DIFFERENT (IT HAPPENED AT 3;00 IN THE MORNING) HE WENT TO THE BATHROOM COMPLAINING HIS HEAD HURT SO BAD HE THOUGHT HE WAS GONNA PUKE. I HAVE NEVER EVER BEEN THIS SCARED....HE IS IN HARTFORD HOSPITAL, HAS BEEN FOR 2 WEEKS, NOW HE HAS PNEUMONIA,AND THEY ARE PUTTING A TUBE IN HIS STOMACH CAUSE HE CAN'T EAT. HE HAS NO FEELING OF LEFT SIDE, BUT HE KNOWS WHO I AM AND THE KIDS. I LIVE 2 HOURS AWAY FROM THE HOSPITAL. THE FIRST WEEK I WAS THERE, THEN MY OLDEST SON WAS AN ASS SO I CAME HOME. NOW I'M LUCKY TO GET THERE ONCE A DAY. THEY HAVE MOVED HIM 3 TIMES WITHOUT TELLING ME AND I WAS ON THE PHONE TONIGHT FROM 6;30 TO 9;00 BEFORE I FOUND HIM. I FEEL I AM TREATED BAD BECAUSE I AM NOT THERE ALL THE TIME, TOMORROW IS MY DAUGHTERS JUNIOR PROM AND I HAVE BEEN APOLOGIZING TO HER ALL NIGHT, I CAN'T GO 2 DAYS NOT BEING THERE FOR PA . I FEEL GUILTY CONSTANTLY, MY HUSBAND DROVE EVERYWHERE SO I AM A FISH OUT OF WATER. I DO AND CAN'T TELL ANYONE THESE THINGS I HAVE TO BE THE STRONG ONE, I FEEL LIKE A ZOOMBIE, I NEED SOMEONE WHO KNOWS, THAT CAN TELL ME WHAT TO EXPECT. THANK YOU

dettgrfan1

Dear Barb & AGINCAJUSC,
I am sorry to have taken so long to reply. My heart was torn when i read your letters because i was in a similar position 2 1/2 yrs ago. I wanted to say something that would be profound and helpful, but nothing would come. I wanted to promise you that everything would be okay, but I didn't know how to explain what okay meant. So i did the worst thing-I did nothing. But you both have been on my mind and in my prayers. Today i came across this website in the Stroke Association magazine. I wish I had seen it when I was going through our "episode". It is: "patientadvocate.org". They provide free, downloadable information on many subjects pertinent to stroke families. The site also has an online chat where patients and their families can ask questions and get answers that day.
For more information:
Patient Advocate Foundation
700 Thimble Shoals Blvd.
Suite 200
Newport News, VA 23606
1-800-532-5274
help@patientadvocate.org
patientadvocate.org

I hope this will help you. Please contact me back and let me know how things are going. I can't tell you what to expect other than everything WILL be okay, you will learn alot, and there will be many changes in your life. You can and will get through this. i cannot stress enough that you must eat well and get as much rest as you can because you have been shoved into the role of the "strong" one, whether you like it or not. Do you know the "Serenity Prayer"? If not, get to know it.

God grant me the serenity
To accept the things I cannot change,
The courage to change the things I can
And the wisdom to know the difference.

This is my mantra.

I hope things are in a good place on your end and you will continue to be in our prayers,
Sandy

sweetbasil

Hello Barb and others
I just found this forum. Barb, I want you to know that you can do this. My husband had a large, deep stroke last year. I remember vividly how helpless I felt while he was in the hospital, how frustratingly slow it all went and how desperately vigilant I was because he was so very helpless.

Fast forward to today. yes, many of the days and hours were painfully slow, but he is at work right now. We went swimming this morning at a community pool that has mornings dedicated to seniors.

Like you, he did all the driving and was wonderfully protective. I always told him I was strong and I guess you could say I got to prove it.

Here are a few things I'd like to share with you both.
Do the therapy. No matter how silly it seems and no matter how depressed or frustrated he and you get, make room for the therapy and do it do it do it. Do it again and again. Ask what he can do when the therapists are done and push him if you must be make sure he does it. That's the difference between staying the bed and getting back to life.

I would literally block the nurses from interrupting the therapists in the hospital. When my husband went to an inpatient facility, I got him dressed so he'd be ready for therapy when the time came.

If he struggles to talk, let him talk even when it makes no sense, the more he talks the better it will get. Like your husband, mine could not swallow. As he begins to swallow, like everything else, practice will help him relearn it.

There is often no limit to the amount of therapy available for brain injury, stroke is a brain injury. If at first the insurance company says no to something appeal it. I've had to educate 2 outpatient and one inpatient therapy centers about this. I learned it from the case worker assigned to us by the insurance company.

Remember, appeal anything that doesn't get OK'd at first and do all therapy available. The hours and days will tick by. Your son may surprise you in good ways too and although you'll be tired and overwhelmed and frightened people who do the therapy get better. It does take time.

Speech, PT, OT and cognitive therapy all help. We bought a box of picture cards to help my husband relearn what common things and places are. It all depends upon what was whalloped. Kids games, card games all help. My husband's stroke was on the left side, yours is on the right side. It seemed to me that the people with stroke on the right side (affects left side of body) recover faster. Yippee for you! Something to be excited about.

I also wish I had known that the body dumps a chemical called GABA into the brain to protect itself from seizures. It slowly wears off and so does the stunned look in his eyes.

I wish you the best.

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