Update RE: "Last visit"

Posted By
POW
2/26/2013 5:13pm
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POW
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Replies: 5

 

Thanks to all of you so warmly sharing your advice and experiences, my "last visit" with my brother went extremely well-- much better than I expected. You really helped!

Most of you suggested that I let my brother set the tone and the pace of our discussions and that is what I wanted to do. Unfortunately, that's not quite possible with my brother because one of his brain mets is pressing against the languge center in his brain-- both speech and writing. So although he can understand everything you say, he can only respond with a "Yes" or "No" or sometimes a single word. So he can't initiate any discussions. However, I did gently bring up the 2 or 3 things I specifically wanted to talk about and by playing "20 Questions" he was able to communicate to me what he wanted to communicate. I was surprised that he didn't dive away from the emotional or spiritual discussions and he was unusually patient with the "20 Questions" approach (usually he throws up his hands in frustration after 30 seconds, but this time he stuck with it), so I think he really did want to make his wishes known about these topics. I am probably the only one in the world who would be able to have even this limited degree of communication with him, so I am very glad that I took this time to visit and converse.

But overall, the visit was not heavy or emotional. Most of the time we just hung out while we watched TV or I chattered on about family gossip or current events. One day I took him to visit some of his best friends and we sat around drinking beer and talking about sailing. My brother got a little drunk (don't worry, alcohol won't hurt him) and I played a CD of his favorite Irish band in the car on the ride back to the nursing home and he was having a ball. Another day I sent away his dinner tray and went out and got a pizza and we sat in his room eating pizza and watching eposides of his favorite old TV program on a DVD I brought him. 

Casagrayson recommended the book "Final Gifts". I highly recommend this book to everyone.Since I don't have a Kindle, I was not able to download and read the book instantly. However, I did read several excerpts of the book on the Internet and a couple of interviews with the author so I got the general idea of what the book was suggesting.  One of the things I did because of this reading was to tell my brother that it was OK for him to let go.

I told him how much I appreciated his amazing fight to "beat the beast" for so many months. The extra 6 months he got allowed the family to come to terms emotionally with the diagnosis. It also allowed him to work with us to settle his affairs and now everything is taken care of which, as his executor, is a load off my mind. I thanked him again for giving us the opportunity to make as smooth a transition as possible. And I told him that he should know that we are all going to be OK in the future and he should allow himself let go when his time comes. He seemed somewhat relieved on hearing that.

I don't know if this will really be my "last visit" or not. Nobody knows, of course, when the end will come and it may just happen that I do get to see him again. But I feel very good about taking this time to have a warm, relaxed visit focused just on him and to address some of the deep topics that we wouldn't ordinarily address.  There are no loose ends or regrets about things left unsaid. Thank you all again for supporting me through this.    

jag - (2/27/2013 - 10:58pm)

You definitely helped him a lot.  As the patient, it is difficult to see your loved ones suffer.  That visit hopefully bought him peace and it is good to see you getting through this.  There will still be more to come, and noone knows how long it will be before the beast gets him, but you are already strong enought to take the right steps.  I wish your journey with him continues peacefully.

Regards,

John

Insert Generic Inspirational Motto Here

Carole K - (2/28/2013 - 9:18pm)

POW<

You brought me to tears and Oh do I understand ALL  of what said.  I am a stage IV Patient having survirved Brain Mets for 12 years now.  I had a younger borhter ( my little brother to me) who was diagnozed with  A MALIGNANT BRAIN TUMOR when he was 10. He was given 3- 6 months to live.  He lived 46 years beyond his prognois.  It wasn't until I had melanoma  I knew the true story of my brother. He was diaagnosed with insurmountable amounts of GBM brain tumors back in 1959. I didn't know then, but learned quickly when dx with my brain met waht GBM's were.  POW, my brother ultimatley became toatlly paralyzed and was in a nursing home. AS cifficult as it was, it was by far one of the greatest gifts I have been given.  Watching him fade away was so difficult and yet our time together was aprecious gift.  My brother could not communicate for two years and yet he and I managed a sign language to talk.  Wow, those were precious times and precious gifts.  The greatest gift was I was and could be there for him .  My being ther was nothing in compariosn to what he gave to me.  He is a shainning star in heaven above to me . He was my rock and my hero to have endured so much. POW. Know your borther so loves every moment you spend with him and you are building so many memories for the two of you.  Glad you got to have those BEERS. Know that no matter waht, you will alwasy smile through your tears for all the moments you shared.  Sending you big hugs to you and your brother. 

Love and Light

Carole K

Gal, Can I say "I love you?"  Well at least your post.  This is what I have tried to tell so many people.  If you ask how I'm feeling or getting along, I'm apt to tell you the truth, but that should not be the end of the communication, whether family, friends or other.  I am me and still have many of the other interests that I have had for most of  my life.  Let's talk about everything.

   I worry tremendously about how my wife will do if I am gone.  She doesn't try to learn anything she will need in my absence.  I have tried to set up some thngs, but it takes more than one.  Having so many thng resolved in advance certainly eases the patients mind.  Thank you.

I'm me, not a statistic. Praying to not be one for years yet.

POW - (3/3/2013 - 9:01am)

Jerry, you can say you love me, even without the qualification. I'll take all the love I can get! smiley

Seriously, though, your wife's reaction to your situation is very, very common. When this all started with my brother, I was fortunate enough to find a really good grief counselor at my local hospice (I'm in Atlanta and my brother's hospice is in Tampa). My biggest issue during our first session was that my mother and brother (who live together) refused to make any changes in their lives to adapt to their new reality. My brother kept forgetting to take his pills 4 times a day but refused to use the special "pill reminder" alarm clock I bought him. My 91-year-old mother struggled to drag out the garbage cans twice a week and refused the neighbor's offer to do it for her. Lots of things like that. My sister and I could see that their lives were becoming more difficult and we could not understand why they so stubbornly resisted our suggestions to make things easier or to plan for getting additional support as the disease progressed.

The grief counselor told me that it is quite common, almost typical, for people to try to keep their lives exactly the same as before the diagnosis. It's frustrating, even frightening, for the rest of the family to watch, but fussing at them doesn't help. She said that it's only when the situation reaches a crisis point-- something really bad happens to jolt them out of their dream state-- that they finally accept the need for change and accept offers of help. 

And sure enough, when my brother's condition finally got to the point where he could no longer walk unassisted (even to the bathroom) and there was no more therapy appropriate for him, he finally agreed to make a will (he had been refusing for 6 months). When he was admitted as a hospice in-patient my mother finally arranged for her cleaning lady to start coming twice a week instead of once a week to help my mother with transportation and grocery shopping in addition to just cleaning. 

So my advice to you is to stop worrying about your wife. I'm sure you have all your important papers (will, power-of-attorney, car title, etc) in one place-- finding and organizing the documents is the hardest part. Trust that when the time comes that you can no longer pay the bills or complete your income taxes, you wife will find the resources to do it. I have never heard of any widow/widower who starved to death or had their electricity shut off because they couldn't figure out how to pay the bills.

Don't fuss at your wife anymore about the minutae of life. Things WILL work out. Just enjoy your time together. 

BillMFl - (3/3/2013 - 11:02pm)

I can understand your frustration, but being the "Queen of De Nile" can be a useful defense mechanism for the spouse who has no control over the outcome. In the recent past at our house we have taken turns at the throne.