Caregiving is hard

• By JennyBlue
• Posted November 13, 2007 at 9:47 am
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Hi Debby,
I am sorry that you have been through so much, and are now met with "grumpiness" on top of worry. I have not been the main caregiver for a VHL patient, although I would stay with my grandfather every Friday after school from my childhood into my teens, until the end of his life. I have also been at my father's bedside during his various surgeries. I always thought that there was nothing harder in life, then to watch a person you love so much be in so much pain. And then, last year, it was me in the bed, and my mom, and my young husband at my bedside. There is such a wide chasm between trying to be there to support the one you love, and looking at those you love so much from that horrible hospital bed worried for you, and keep a "strong" face on. I am ever indebted to my mother and husband, but it doesn't mean that I am not grumpy, especially with them. They are the closest ones to me, and so they get the full force of it. I don't want there help, I don't want to need it. And I have recently learned that it is almost as though I am in the stages of mourning. Mourning the loss of my former VHL-free diagnosis, my freedom of mobility, my endless possibilities of a twenty-something. I have been VERY fortunate in my recovery from two open surgeries for spinal tumors. And, the safe and healthy birth of my twins, but I am still grumpy, and even downright angry.
I have been so blessed, and yet I am so discouraged at times, dealing with neuropathy in my legs and pain still in my feet.
I know from my experience I only felt as though the major dark clouds of anger release after about three solid months of healing, and it sounds like your daughter hasn't had an opportunity to recover from one tidal wave, before encountering another.
I don't know if this will help, except to say that your daughter sounds like a fighter, and will therefore be stubborn in "giving up" and letting you in to help. And, that is a good thing. If I had given in to the pain, and not kept fighting against the odds, I, and my babies would not be here today. Unfortunately, it means that often keeping that fight up, means I lashed out at my loved ones. I can only wish you luck, and let you know that I will keep you and your daughter in my thoughts and prayers.

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• By Debby3
• Posted November 13, 2007 at 1:47 pm
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Thank you for your encouragement. It does help getting the perspective of someone who has struggled with VHL and the moodiness. I will strongly take your advice and sit tight and let her do what she needs to do. You are right - she is a fighter and I must let her fight the way she needs to. Thank you again.

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• By kleineflute
• Posted November 14, 2007 at 5:48 pm
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Hi Debby,

Being the caregiver is very difficult, and you need support too. I am in a somewhat similar situation to yours, in that there are no VHL-specific support groups in Cleveland where I live. I am not a caregiver; I have VHL.

My physician suggested I call a center which offers free services for those whose lives are touched by cancer. I have found a support group I can attend for people dealing with long term illness. For the first time, I feel there are people I can talk to who understand what I am going through. We all face overwhelming problems, no matter what the name of our disease. We gain strength and learn from each other.

There are facilities like this which offer free services in most areas of the country. In your area, I found the Cancer Coping Center in San Diego www.cancercopingcenter.com .The American Cancer Society sponsors support groups for San Diego and Imperial counties. There are general support groups, caregiver support groups, and family support groups. You can visit the ACS website or call 1-800-227-2345 for additional information.

I hope this information is helpful to you. VHL is too great a burden to bear by yourself. I hope you can find a group that will help and give you the encouragement you need.

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• By LizCostaRica
• Posted November 19, 2007 at 1:14 pm
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Sorry for my english, I’m writing from Costa Rica (we speak Spanish here).


I’m 33 years old, and I’ve been married since I was 26, with a wonderful person with vhl.


He’s ok now, but he has a lot of surgerys (kidney, spinal cord, eyes, brain), I think all people who is a caregiver, is very brave and give part of your life to someone else.

I been a caregiver, and I know, it could be very difficult, sometimes because we don’t want that people that we love be in deep pain, other times because we want to do all the things for them (even their decisions), other times because they’re so upset with all the things they’ve been through, that they can’t handle their relationships very well, and other times because we (caregiver and person with vhl) don’t have control for what VHL can do.


So I’ve been thinking a lot which’s the best way I can help, and I think
Our care depends from the moment, your help could be different at different times (support, listening, help to heeling, be there, help in recovery time, etc). And I know for sure that you gave help in to your daughter’s life, Also you are a fighter.

You can ask what kind of help they want, and what moment…. Your daughter (like my husband) is an adult person, and she has to take control of her life, we can do some of that help and maybe we have to find other people (friends, counsellor, etc) to help in other things. It’s important to talk about this things, so you and your daughter don’t feel bad about this kind of things.

We have to accept that’s the help that we can do, we can’t change the fact that they live with vhl, but we can do a lot of things to have better relationships and to enjoy the life we have together…
I don’t know if I help you with this things, but certainly this things help me to have better kind of life for me and my husband..


Hugs,
Liz

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• By beccaloo
• Posted December 3, 2007 at 10:24 am
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I know you posted this a few weeks ago, but I don't get to read the website as often as I'd like to. I'm 31 (almost 32) and have vhl. I went through the wringer back in 01 and 02 where I had 5 surgeries and radiation in a year and a half. I went from a new young professional headed down the golden road to almost paralyzed or worse within a year and a half. I was lucky in that my then fiance was able to drop everything and move hundreds of miles west to be by my side and really take over my life as he pulled me through the long days and longer nights. We even ended up getting married in the hospital as I recovered from having part of my kidney hacked off b/c of cancer. I honestly don't know how he and how YOU do it!

I was and still am a miserable patient. I'm all cream and sugar to the docs and the nurses, but I treated David horribly and I while I knew I was being horrible and ugly, it was like I couldn't stop! I'd be throwing a cup of milk at the door one second and the next be bawling in his arms apologizing over and over. I know the first year of marriage is hard, but man, coupled w/vhl it was miserable. I look back now and am still embarrassed and ashamed of some of the things I did and said and I still apologize and he tells me over and over that I don't need to say sorry because it wasn't me talking...it was the vhl. I know now something I didn't know then: it's so much harder to be the caregiver than be the patient. Now I don't want to speak for everyone, but from my experience and watching others, friends and family, go through medical troubles, everything from seasonal allergies to a second kidney cancer surgery (my mom, not me...not yet anyway) it just seems to always ring true. I had someone ask me how it felt and what was going on in my mind when I learned I had vhl and what was going on in my body and I really didn't have an answer. I felt sad, scared, and more but I also felt very numb and approached it almost business-like. Very matter of fact. But David, he had to watch me go through it and he felt so helpless because he said he couldn't do anything to help make the pain go away or make me feel better or make the tumors stop or go away. He had to sit and wait for hours on hours worrying during each surgery while, to be frank and put is simply, I slept. Sure, I was having an operation, but I was under anesthesia and dreaming of puppies and kittens.

I can't speak for your husband (I am so sorry for your loss) or your daughter but for me, my emotions were all over the place and while I put on a brave cheery face for the public, even my friends and family, I could be myself with David and feel what I was feeling and not have to mash the anger and frustration down into my toes. I realize now that I was never angry with him. I was angry at my gene's and my kidneys and my brain and my spinal cord and myself, even though it's silly to blame myself for getting sick. No one is responsible for that! David knew I loved him (and still and always will) but I know I didn't and sometimes still don't show it. I can be my true self with him - no fake happy cheery becky person - but myself, warts and all because he loves me no matter what, unconditionally and that is the best medicine anyone can give you.

Hang in there. I'm not much of a mantra person but there are four kind of sayings that have helped me, helped US, get through some of those hard times. First from my dad: Life's what happens while you're making plans. Next from one of my mentors: 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. Third from a great dear friend: God will never give you more than you can handle (another version from mom is: you're made from stronger stuff than that, kiddo.) and finally, from mom (she'd use this one when my sisters and I were fighting!) You don't always have to LIKE your sister but you DO have to LOVE your sister! Just swap in your own family member in there for sister and it works just dandy.

I hope my lengthy email has given you some peace. As I said before, I don't know how you and the other caregivers do it. It takes a strong person to stand faithfully by and watch a loved one go through what some, most, or all of us w/vhl have had or will have to go through. And never, ever, be afraid to reach out here to the discussion boards and ask for some encouragement and help in re-righting your compass! Good luck to you and your daughter.

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• By Debby3
• Posted January 14, 2008 at 11:16 am
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I wanted to update you on my daughters recovery. She has moved forward - at her own pace - and I am very proud of her. She is driving again and going to school all by herself. She is walking with the walker part-time and learning to walk with a cane. She is still in the wheelchair about 70% of the time but she is moving forward. She is no longer grumpy. Thank you very much for your encouragement for me to sit back and let her do this herself. That was surely the right move and she has done well. She is in wonderful spirits too.

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• By JennyBlue
• Posted January 21, 2008 at 10:43 am
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Dear Debby,

I was so glad to hear of your daughter's continuing recovery both mind/body. Please let her know that we are all out here thinking/praying for you all. I hope that the New Year brings good health to her and you.
Best wishes
JennyBlue

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• By Spobear123
• Posted June 9, 2008 at 5:10 pm
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I am caregiver of my husband who had 2 brain tumor's removed lot's of surgery's 10 more surgery's in is life. We facing two more surgery's very soon. I have a friend who told me about VHL I am concern if my husband may of had that too. Brain tumor's do develop with this. We just found his records of first Surgery it help us learn he could have MRI when MRI they found new Tumor they say develop because the Radation he had. Two new surgery going to be repair the skin so damage from Radation all 5 surgery had on his head . I had deal with anger with him. I know he can't help some of it. Medication surgery to brain very life changing for them and caregiver's .I have Valley caregive I can call. Just hearing not alone sure been life savior for me. I work with children have these Problems to . I am bus Aide for Special need children all training I had help me greatly. Iam available if just need to talk to someone. my email address is Spobear123@hotmail.com. Sandra caregiver

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