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Be with me - i nees caregivers perspective

Clearblue
Posts: 188
Joined: Apr 2010

Hello , im usually on the head and neck.

My wife who is Fancini Aneamic and after 4 surgeries the last year and another 3 in previous years , has finally had to succumb to the "no choice" of radiation, which is considered life threatening. This is because Fanconi patients who are prone to malignancies and bone marrow failure, have problems in cell repair. So kill off enough good cells and you kill off the person simplistically put!
I know this is blunt, but we just don’t know what kind of reaction she will have.
She will have erbitux too, as chemo is a complete NO, owing to toxicity.I believe my wife is one of the eldest FA anaemic adult patients surviving. (SweetB- youre still a young chicklet).

I am fearful, as her physical starting point is compromised too by multiple throat surgeries, including Lung surgery for squam a year ago.

Our last PET SHOWED Squamus cc of hypopharynx+ a spot at the place of previous opp where her asoph was removed except for a small join now to the stomach. Stomach has been lifted up into the -chest area.(after gastric pull up). Also spot on Lung (cosidered a recurrence of scc from previouse opp)

We will now have Radiation of throat and down to aesoph area-planned for FEB 14.I know this is going to be difficult, i pray shell be strong. Shes walking, talking , and working as much as she can.
She is my light;i cant think of anyone happier in a relationship than me.I am rich by this.I move between wanting to dance at home to celebrate life on the one hand and am rendered
momentarily passified on the other.

I have been with her for every breath of her 14 year battle. Every meeting, checkup, surgery and heartfelt moment. All this ws surgery based. Now its obvious to me that this time the scenario is different.Both for her and for me. I got to maintain my job , run the home, be at her side and logistically seems impossible. In a previous post i asked about rad effects and remedies you use/d. I want to add the following.

I want practical advice of how i am to organize myself for the comming "inquisition":
1.What do i need to have at home on the assumtion that shell be at home , and not hospitalized at least initially?
2. What do I need to find out/organize/take into account when I look for a small group to help me?
3.How am i to function as the husband at the hospital on the assumption that shell be hospitalized?

I know too that all the scenarios i plan for might be nothing near to reality and perhaps i should be more humble. Yours Clear B.

skipper85's picture
skipper85
Posts: 231
Joined: Sep 2010

It sounds to me you are doing just fine. You will instinctively know what to do when each circumstance presents itself.

You can't do everything yourself. At the hospital you can talk with her social worker or the doctors and tell them your work circumstances. They will tell you what help is available to you. If your insurance allows they may set you up to have a home health aide come into your home daily to help you. Please ask your doctor or the hospital for support groups and agencies in your area that can help you. You don't want to burn out because then you won't be able to do anything for her. Hospice can also help. Hospice is not only for the dying but for those with life threatening illnesses. Talk with your doctors about it. They would have to contact them for you.

As far as chemo goes and radiation - she has been battling this a long time. It might be time to say no to all these treatments and let her live out the rest of her life with some kind of quality. Erbitux is very strong - my husband had an anaphylactic reaction to it. He had to go to the hospital to get stabilized. The incident surpressed his immune system and after that he went downhill like a rock. Stopping or changing treatment is a very difficult decision that only your wife can make.

The most important thing to do is just tell her you love her. Give her hugs and kisses and support her decisions.

Don't lie to her about her condition. Make sure the doctors are being up front with you and her about her prospects for survival and not just making her go through all this chemo and radiation with the "hope" that it helps. Be realistic and realize when enough is enough.

You sound like a great husband. I'm praying for you and your wife.

(((HUGS & LOVE)))

Skipper

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

So far, it sounds like you have been all you can be and do as a caregiver (sorry for the cheesy reference) The only advice I have is to be and stay present. It settles my mind to plan ahead for as much as i possibly can, but some things you just can't plan for. I'm running into that now and I go a bit crazy when i think about that. But all I can do about it is wait and see. Hopefully, that particular scenario will not come to pass.

Small groups are a very personal decision. Whomever you choose to meet with, either one-on-one or in a group setting, let your gut make the decision. They might have all the credentials on the door, but if it ain't right it ain't right.

All I can say on the home/hospital question is to do what you have been doing and follow her lead. Been working so far - why change what works?

When you are in the hospital, look at it this way (This is how I did it, but results may vary ha ha): You are the personal assistant to the President. EVERYTHING must either go through you or you need to be updated regularly. My husband, when hospitalized, was never alone during the days for the simple reason that I have all of his info and can better relay information to the doctors. Patrick is a laryngectomy and cannot speak without his Electrolarynx. It's either that or lip read and not everyone understands either. I became Mama Bear when he was in the hospital, and I also helped out the staff as much as possible - keeping track of meds and vitals, cleaning up mucus when needed, communicating with the staff when he needed something. I never left before shift change at night so I could fill in the night staff on what's been going on, the meds he has been on or the meds I feel could be useful/discontinued, etc. The last hospitalization this was very important as he had some serious complications, and every person I saw always asked about his PEG tube which was still in but not being used at the time.

All in all, you have been doing a great job. Give yourself a gold medal and know we are all here if you need us.

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello and may I send you many prayers as you continue to be an excellent caregiver for your wife. Wow a 14 year battle. I was smiling when I read you think she is still a young Chicklett! I would suggest you call in hospice or a home health nurse to help you. Skipper is correct, you can not do this alone. Do give her many hugs and tell her you love her daily. And yes, you do have to go with your gut feelings, and you do know when to say enough is enough. Give your wife your blessing so she can move on, this will give her the peace she needs. Stay in touch!
Tina in Va

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