Don't Lose Heart

Hello, and thank you for the chance to relate care giving stories!

First, I have been a fan of Dan and his music since the late 70′s and literally have all of his music, and have been to several concerts over those years. In my relationships I have always related to the lyrics, and have always played Dan’s music at home, in my cars, and in the sailboat I lived on for 9 winters! (Ft. Lauderdale and Key West)

Since I am an avid inland and ocean sailor (and I raced Hobie Cats too) I could really relate to “The Reach” and was really happy to find out Dan was a sailor also. (Thank you for publishing photographs of Dan sailing, those are better than all the album covers combined! YAY!!) I realize this was his birthday…. a few hours ago, and I was humming “The Reach” at 6:30 pm while I as still at work!

My husband, Tom, was diagnosed with intestinal cancer in the late stage. We were in the fair food industry for many years and it is a physically demanding business. He was still able to work the business quite a bit because he was strong and healthy to begin with. I was his sole caregiver as his relatives were all living out of Indiana and had no inclination to help. We were in our “off season” when he got worse, so at least I had time to devote to his care toward the end.

By now you know all the classic symptoms we all have, especially the lack of sleep. I only slept when he slept but you knew that! He was 53 when they found it, and lived only 2 more years. I am 57 now and am still trying to recover from the high blood pressure. Nurses and friends told me how to cope, but I did not get any help for the actual care. Looking back on it, that was ok though, as I knew he was getting the best I could offer.

These were my “coping mechanisms”  ……

On my own I realized that my sense of humor stayed with me and in retrospect that was a major survival factor. I have a quick wit and can twist the English language easily, (mostly puns and plays on words) and Tom always liked that so I never stopped.

I discovered how medicinal lavender is and that actually helped and it was a pleasant distraction, and I used it in several ways. Lucky for me, Tom liked it too and we used it on our pillows at night.

Visiting local friends was good for Tom because he was able to talk and “leave nothing unsaid”.

Little things started between us that had never occurred before that became endearing, like every time I walked in the door from outside and entered the room where he was, I would always say, “Hey Honey, I’m home!”  If I did not say that he would look very hurt, and ask me to say it anyway, so I got so I never forgot it again. The times he was in the hospital, I would say it every time I re-entered his room regardless if a nurse or doctor was there, they thought it was “cute”, but Tom and I knew it went deeper than that!

Whenever he woke up and if I was right there, I would say “Hey Honey, I’m still here”.

When you care for a loved one whom you know is terminal, you develop a deeper bond between you that no one else can penetrate. We had been drifting apart before he got sick, but that brought us much closer together than we had been for some time.

Something I learned out of it, was to NEVER walk up to a sick person who has lost a lot of weight and changed, and then say to them, “By golly, I didn’t recognize you!”    This happened to Tom a few times toward the end. I would be pushing him in a wheelchair in a local store, and people would say, “If it hadn’t been for Henri behind you, I would not have recognized you!”. WOW! Don’t EVER do that to anyone, THINK first!! Tom actually sat right there and started crying…..

After he passed away, I could not afford to stay where we were renting, so I had to change houses, change careers, and change cities. I can’t stay in that business by myself, so I am still trying to find my way.

I would advise others to go ahead and explore the changes you see are inevitable if you possibly can, because I have outlived all of my relatives and really had no backup plan for such a major change.

I am still healthy and strong and after the move I still have my sense of humor and am loaded with optimism, and saleable skills…… still working on finding a new niche.

I also took care of my mother to the bitter end as she lived to be 94 years of age. I single-handedly kept her from going to a nursing home, and I had no other siblings or anyone else to help. I was juggling the fair business as well, and lack of sleep was the same theme. She was able to stay alone for short periods and friends called her to check up on her. When I got back home each time, there was a lot of work to catch up on but the fact that she was my mother and we got along very well made it all worth while…… I would do it again…… wouldn’t you?

My mom was my last living relative and her passing left me alone except for Tom in my life. She died in 2000 and then Tom died in 2005.

I slowly went deaf in 2003, but through a cochlear implant, I am back to as normal as you can get with one, so the timing on that was right between taking care of my mother then taking care of Tom! Whew!

I am grateful for all of Dan’s music up until I went deaf, because now, I don’t “hear” music the same way I used to. Any music I memorized before is still in my brain and I can still enjoy older music, but with newer music I don’t get the melody quite right. I now hear there is a newer implant that has 170 “channels” rather than the 24 I get now, so I am hoping I can get that one someday and hear music again!

I was a teacher of computer science before I got in the fair business, and assumed I could get back into it, but my age and my hearing may be a factor in keeping me out of it. I have been trying for 3 years and still trying.

In the last year I have also been looking for private care giving, as I have a lot of first hand experience, and I really have the patience for it. I understand a lot of what the patient needs and I still have a lot to give. I understand about being disabled by a disease and as I lost my own hearing slowly, I became disabled myself, and can really put myself in another ones’ shoes.

I thank you for letting me relay the things that I went through as a care giver (twice) and I see so many other parallel stories as to what we all go through. We all have the little things too, that keep us going, and all in all we mostly survive one way or another. It makes us stronger in the long run, and older and wiser!

To you Jean, I sort of know what you went through, but no two cases are alike, so I will not say I exactly know, but since Dan has such a great legacy for you to carry on, you are very blessed in ways the rest of us are not! You get to stay in touch with his fan base and carry the torch for such a worthy cause!   That must be exhausting as well, though! Please watch out for your own health, there is no substitute for real rest, and surround yourself with people with positive attitudes! It is working for me to a degree!

My care giving has left me in a position very few are in, I am starting over in every sense of the word as I have now outlived the last two family members I had to my name. I don’t even need to stay in Indiana any more, and I can look for work anywhere and everywhere! While I am still strong and healthy I want to find my way while I can, wish me luck!

I have read all of your newsletters, and I have bought “Sometimes a Song” from iTunes, it is playing right now. WOW, great song from what I can hear! You are still blessed in many ways, please don’t lose sight of that! I wish you much success with your current endeavors, you and I both can benefit from one of Dan’s other songs…… Ever On

Warmest regards always,
Henri R