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Hi!  I'm Samantha, wife and mom of 2.  I am caregiver for my husband who is currently waiting for a heart transplant at Stanford.

 

He's been on the list since Dec 3, 2010, and we spent over a year with the required tests, med changes, before he was listed.

 

I've been looking for a support place for caregivers online since the nearest support group in my area is at the hospital, over 60 miles away.  I needed a place where I can talk to people that understand how I am feeling without seeing me as being selfish or uncaring.

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Welcome Samantha...

 

It is quite a challenge waiting for a transplant... coupled with caring for two children... even more so.

 

You have found a safe haven here where you won't feel selfish or uncaring. While the site is for caregiving in general, you will find many have posted with regard to transplants but the most valuable aspect of the community is the emotional and spiritual support along with the resources we can guide you to.

 

I am sure there is a lot more you would like to share and get off your chest.. we are here for you.

 

Richest blessings in all you are doing..

 

gail

Hi Sam

 

Welcome!

 

You have no need to feel guilty! In fact you have every right to also be acknowledged. I know the 'invisibility' comes with the territory. Everyone always asks about the one being cared for...

I had many occasions where people ask after my mother, don't ask me how I'm doing, then to add insult to injury don't even wait for my reply about my mother!

 

I read once that the person behind the wheelchair is invisible, people only see the person in the wheelchair. I thought that strange until it actually happened to me.. and then I understood and it actually made me mad. From then on I always greet, acknowledge, smile at the person who is doing the caring, then I speak to the one being cared for. It's a strange little distinction I'm sure but somehow it makes me feel that I'm doing something about the crime of not acknowledging the caregiver.

 

You are not selfish or uncaring! The very fact you are doing what you are doing means you are not a selfish person. So you give yourself a pat on the back and try by all means to make some times for yourself, even if its just 20 minutes. it really does help.

 

Hugs

Sk

Hello Samantha:

 

What a difficult health crisis you and your family are dealing with. I can imagine that, after a year of all that preparation, you are probably exhausted by now... It can be such a roller coaster ride with all sorts of emotions attached.

 

I think sometimes that is the most difficult part is trying to keep going when disabled by anxiety or anger etc. It helps to have others understand that we have feelings about the situation also - but many people don't get it! Just know we are here for you...

 

Skwirl said it best about being invisible when being a caregiver. It is sad but true. She is right also that you are a loving and caring person even when you don't feel as if you are... I have been there myself! Remember to take that time for yourself because it is important to gain perspective on things. Take a walk in the garden, breathe, and find ways to reward yourself in little ways if you can - be good to you!

 

Hugs, Glenda

Hi, Samantha.

 

Wow!  I was scared to death when my husband had open heart surgery.  Having to wait for a transplant must be very wearing.  How old are the kids?  Are they old enough to understand and be helpful?

 

We're here for you, even if you just need to vent.  In the meantime, I'm sending cyber-hugs and positive energy your way.

 

-Barb

The worst part of all of this is the waiting and not being able to plan anything.  When the call comes our lives will be on hold for 3 months.  Since we live 60 miles from the hospital, we have to live up there for 3 months after. 

 

I've been trying to give myself some me time.  I tried to get my mother in law to come up for a weekend so I could go on a ladies camping trip with a bunch of my friends, but she can't be bothered.

 

The kids are 12 and 9 and have been a huge help.  They'll stay with him so I can run to the store or even just to take a walk around the block.

 

Thank you all!  Just knowing that there are people that understand and that I'm not alone helps a lot.

Hi LongRoadAhead, your name is very fitting and I wish your husband and all of you the best of luck through a very difficult time. I just want to mention that there is a website called "meetup.com" that hosts many different types of groups whether it be walking, hiking, mom and kids stuff, etc. and all in your local area.

 

 Someone gave me this link over a year ago and I joined a local walking group (haven't been in awhile) but none the less, it is there whenever I want to join in...

 

 You might want to check it out and maybe you will find something there in the way of a support group with people who are going through what you are. This forum is priceless and one shouldn't take away from the other which makes it nice. Fill your world with support, you need it. Best wishes.

Hello Samantha.. SK described the invisibility of a caregiver only too well...people just can't deal with illness, death etc... they all back away... we lose friendships etc.... but no one seems to understand the plight of caregivers unless they are there themselves or have been there... If you give us your zip code either here at the boards, or you can email me directly there may be a Faith In Action volunteer program nearby to you or other programs that might offer some relief for you... how old is hubby?

 

gail

Don't know how far Stockton is from you but this is info on a volunteer program they have

St. Joseph's Interfaith Caregivers

 
 
Sr. Katherine Hamilton
1800 North California Street
Stockton CA 95204
Phone: (209) 461-5112
Fax: (209) 461-5085

Unfortunately hubby is too young to qualify for many senior services programs but you can prevail on them for support...we never turned anyone away when we had our program... Ask them to suggest other programs available in your area as well.

 

I am sure you have explored other avenues like SSI and disability, etc.

 

Hope this helps

 

take care

 

gail

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