Appreciation for the Caregiver

The keynote speaker at the HDSA Convention this year was a guy by the name of Peter Rosenberger.

Long story, short, he is the caregiver of his wife who was in a car accident over 30 years ago and has endured 70+ surgeries, over 9 million in medical bills and amputation of both legs among many other issues. 

So, obviously he has a lot of experience being a caregiver for someone he loves. He brought so much fun and laughter to those of us who are or will be caregivers for a loved one. He also had a lot of wonderful advice on how to not lose yourself in the mist of being the caregiver. But that isn't what I wanted to talk about today. Instead, I wanted to talk about a question that somebody asked during the question and answer period. It is something that still bothers me several days later. 

The question?

How do you feel appreciated when the person can no longer tell you they appreicate you?

You could tell that Peter was a bit surprised by that question. I was, too.

As caregivers, we aren't doing what we do to get appreciation from the person we are taking care of. If that is the reason you are taking care of the person, you are doing it for the wrong reasons. Today, I cook dinner for my husband, do his laundry and clean the house because I love him. Yes, I do like it when he tells me thanks for doing that or says that he appreciates me, but I am not doing it to seek his love and appreciation.

I don't mean to make light of the fact that being a caregiver is hard work and can be one of the most thankless jobs out there. It is tough and overwhelming and tiring and emotionally draining and so many other things. It can be made even worse when the person cannot tell you thanks for the wonderful job you are doing. However, I don't think you should be doing the job if you are seeking appreciation and thanks from the person you are taking care of. If you have reached the point that you are feeling unappreciated for all of the hard work you doing to care for a person whose brain is being destroyed by his or her own body, are you truly providing the best care for the person?

Later that night, Robert made it a point to say that he already appreciates everything that I am going to do for him because he knows there will come a day when he won't be able to tell me that. My response was that I will not be doing it for his appreciation but out of love for him.

I will also say that I do appreciate Robert's brother for all the tine he spent taking care of their mother.  I know that it was not an easy but he did a great job. I also know that their mother appreciated it a lot and was very appreciative of all he did, even if she couldn't tell him she was herself.

Finally, I will leave you with the words of Peter himself as found in his book Hope for the Caregiver. 

The one we care for may not recognize or even appreciate what we do on their behalf, 

AND THAT'S OKAY -

If we love them we're doing it for their benefit, not ours.

What a Week it Was

Things are always better when they are free. Right!?

I have to say that the last week would have been wonderful even if it wasn't free, but that did make it a little bit better.

Back at the beginning of the year, I submitted my application to the HDSA for a scholarship to attend the annual convention located in Baltimore the first weekend of June. I thought I had read that winners would be notified around the first week of April. When I didn't get an email that week, I was bummed because I figured I didn't win. So, when I got an email around April 20th saying that we were awarded a scholarship, I was over the moon. I am not sure there is even a word to describe how excited we were. HDSA covered three nights at the Hyatt where the convention took place, all convention activities as well as reimbursement of the air fare to and from Baltimore the moment we checked in at the convention registration desk. 

It was made even better by learning that we could fly up the weekend before the convention and spend some time with one of Robert's brother and his wife. Since it is roughly a 20 hour drive to get to their house, it isn't as easy to hop in the car and drive over. It has been a few years since we have seen them. One of his other brothers even made a six hour drive from North Carolina to spend some time with us. Great way to start a week of vacation. 

We flew up to Baltimore on Sunday, were met by Robert's brothers and spent Memorial Day on his brother's boat near the Potomac River. We then spent a couple of days with them at their house up in the mountains of West Virginia. It is all beautiful country.

Then, Thursday morning, we packed up and headed to the Hyatt Regency of Baltimore that is located in the Inner Harbor. We could see Camden Yards from our hotel - if only they were playing the Rangers instead of the Yankees this past weekend. We could also see the field were the Baltimore Ravens play but that means nothing to me.

It is a beautiful hotel and a very nice area. There are historic boats you can tour, lots of seafood places to make Robert happy and some neat shopping spots. We enjoyed walking around and checking it all out Thursday night. Then, the real reason we were there got started Friday morning. 

It was 48 hours of so much useful information, so much hope for the future and even some laughs and fun times talking with people that know exactly what it is that we dealing with in our journey along the road named Huntington's Disease. 

I picked up tons of materials from presenters, the different vendors and took lots of notes from the workshops that we attended. An added bonus was the caregiver support group that I went to that was lead by the HDSA social worker that oversees our local support group. We also got to dress up and attend a gala and play some fun carnival games and get tattoos. Now, those tattoos may have been temporary, but they were still fun.

I have lots of information that I received that I want to share with everyone and hope to do that over the next few months. Things like the awesome chairs we saw that are actually designed for people with a disease that has the chorea often associated with HD and the amazing info they shared about the testing of a gene silencing drug.

 I will say that if you ever have the opportunity to attend the annual convention that the HDSA does each year, take it! It was so amazing that I want to go every year, even if it means I have to pay for it out of pocket.