Forum Style

How do the spouses deal with the stress?

I hate to admit it but I am not being the support I'm supposed to be for my husband.

After 11 years of dealing with his heart failure, surgeries etc we are finally getting to the nitty gritty and Ive fallen apart. He was hospitalized because he couldn't breath and had a lot of fluid removed from around his heart.

Hes never gained back what little strength he had. He lost a pound a day for 12 days and has finally began to eat and gain some weight back.

His Dr thinks its time to check in the hospital and stay until he gets a heart and we will see on Thursday if that's what happens or not.

We live a long way from the hospital so we have rented a place a few blocks from  it to be on the safe side. Hopefully he will get a heart soon. This is what we have been waiting for.

I'm sure many of you have lived this and worse but what I can't figure out is me. Ive suddenly become a basket case. Instead of being strong and smiling for him all I can do is be terrified and cry and cry!

I'm totally and completely helpless in controlling my emotions. PLEASE! Anyone else out there go thru this? How do the caregivers deal with all the stress? None of our children live close and I have nobody. I feel so helpless and alone. Suddenly its overwhelming and almost more than I can bear.

Its embarrassing to even post this knowing what hes going thru and many of you are too. I'm desperate.

 

 

You need to be a member of TransplantFriends.com to add comments!

Join TransplantFriends.com

Email me when people reply –

Replies

  • Dear Mary, it is so difficult to deal with what you are going through. My husband received a simultaneous heart and kidney transplant and I learned many things through the process. The most important was that it is OK to ask for help. I was a basket case, crying all the time. I called my doctor and she put me on an antidepressant and sent me to a therapist to work through the critical stress using EMDR. Your friends and family do want to help you but they don't know what to do. You have to ask them. Whether it is an hour away by yourself, a shoulder to cry on, a glass of wine, help cleaning your house, ASK. It takes a community to have a transplant. We had strangers bring us meals and provide housing for us near the hospital (our home and 4 children were a four hour drive from the transplant center. My parents (in their 80s) stayed with my children for two months, twice. People transported my kids from our home to the hospital (4 hours each way), others "baby-sat" my husband so I could go to work. A teacher set up SKYPE so my husband could watch (from his hospital bed) our twins graduate from 8th grade. My point is this: take care of yourself and then ask for help. Try to be specific as to what you need. That is not always easy and sometimes someone else might point out things that could be helpful for you. Remember that your transplant center is looking out for your husband (you still have to advocate for him) and you have to look out for you, even if it is just asking for help. Best wishes to you. Beckums70 is absolutely right.

    • Thanks so much! I hope your husband is doing well. I agree with everything you've said and it helps so much to hear from people who understand.
      My problem is I have nobody to ask. We have 5 grown children but none live close and I guess I spent so much time raising them I have acquaintances. No friends. I plan to talk to the social worker assigned to our case about emotional support. I have heard there are support groups.... Not the same as friends to help but at this point I'll try anything.
      • Mary - do speak with the social worker about a support group. Our area (Portland, OR) didn't have one so I searched out people to speak with. A really good place is the cath lab waiting room - you can strike up conversations with others waiting for their loved ones. Also, I admit to doing a fair amount of eavesdropping around the hospital floor on which my husband was staying. Doctors and nurses typically won't introduce you to other heart patients because of confidentiality rules but you can probably figure out who the heart patients are. Walk around, look in doors, eavesdrop... You can just knock on the door and ask if you can come in and talk. It is ok if they say not now. If you are a member of a church, you can ask them for help. Also, if your husband has co-workers (mine worked up until 12 months pre-transplant) you can try them. At least if they visit him, you can get a short break. And thank you, my husband is doing great. We go in for his 5-year check up in two weeks. Zero rejection so far and he was able to ski 37 days this winter!

        • I sure will talk to the social worker. Shes really kind and I'm sure she will help all she can.

          My husband had to quit working almost 12 years ago and sad to say most of his friends have passed away during those years.

          Thanks for all the suggestions. I will use them all.

          I'm so happy that your husband is doing so good!!!

  • Mary, reading your post breaks my heart. Not because of how you feel, you are completely normal as the human body and psyche can only tolerate so much stress over a long period of time before it begins to break down. Don't take this wrong, but you may be haveing a small break down and need help, I mean physical help with your husband so you can catch your breath. Reach out to a few people and see if someone has some time they can offer you, a couple of days, a week or more. I offered a month to assist with a friend when her husband waited for his liver tx. Being a liver recipient, I knew the cost to the care giver. Fortunately, her husband was divinely healed, I mean for real, and my services were not needed but I am ready to pay it forward for all the help I received. I do from time to time give if my time as needed but I know I will be called on to eventually help in a much bigger way. No "one" person can do everything and keep the pace while staying positive. My sisters and husband barely slept as they dealt with all my complications. Ask a social worker you are working with at the hospital to make some suggestions if friends or family cannot help and please leave guilt for those that are doing wrong, not for a broken wife who wonders if she can give anymore. Of course you can but not alone. Will be praying. Trust those that love you and let them show you.
    • Thank you so much! I sure didn't take it in a bad way. I know I'm very near a breakdown. I will talk with the social worker. That's a great idea.
      I appreciate the suggestions and kind words. It helped
    • Perfect so beautifully said
      • i agree Mary be good to you

  • Please don't be embarrassed. Your. Basket case because your worn out. I too was a caregiver to my mate who suffered with Advanced Parkinson's Disease with Dementia and Paranoia, Bizarre Hallucinations..I became quit I'll myself from the daily unending stress. I saw a very informative program given by Medical Experts concerning the plight of caregivers. Not professional caregivers but spouses and other family members who tend daily to the profound needs of their loved one.. I was jolted when one Doctor stated that in some cases the sick family member continued to live while the family caregiver due to the extreme sometimes unrelenting tasks died..And sad to say I could so easily relate to this information..Ultimately my loved one had to be placed in a 24/7 Care facility..
    • I'm so sorry you and your husband have had to go thru that!!
      I appreciate the comment letting me know it's not unusual. Maybe somehow that will make it easier to go thru. For the first time in my life I just want to run as far as I can and not deal with one more decision or Dr etc!! I'm hoping I can get thru this and everyone's encouragement is helping. Thank you
This reply was deleted.

Transplant News

   

                      Transplant News

Twitter

COTA

Purolator Air Filters

Facebook & instagram

Looking for My Kidney Hero

My dear Friend Susy - a double lung transplant survivor is in need for a Kidney Angel (O positive blood type).  If you can be Susy's Hero- contact her at susygar@aol.com Thank You So Much!

Latest Activity

Andres Patino replied to Andres Patino's discussion What are your Tacrolimus Levels?
5 hours ago
Andres Patino replied to Andres Patino's discussion What are your Tacrolimus Levels?
5 hours ago
Rushi replied to Rushi's discussion Weight gain for donor
5 hours ago
Rushi replied to Rushi's discussion Weight gain for donor
5 hours ago
Kidneyboy replied to Rushi's discussion Weight gain for donor
5 hours ago
Kidneyboy and Rushi are now friends
5 hours ago
Andres Patino replied to Andres Patino's discussion What are your Tacrolimus Levels?
6 hours ago
marty wiggins posted a discussion
6 hours ago
More…

Lung Transplant Foundation

Contact Us