Stepping our of your Comfort Zone

One thing you  learn early in marriage is the art of compromise.  Sometimes, you have to do things that you don't want to do. It might mean stepping out of your comfort zone and doing something that your spouse wants to do. But in the end, you are glad you did it. Has that happened to anyone else before?

That is the story of what we did tonight. Something Robert was not comfortable doing but did it for me and now he is glad he did. And get your minds out of the gutter!

For some time now, I have wanted to attend the local Huntington's Disease support group but Robert has not wanted to. He isn't as bad off as many of the people there so it makes him uncomfortable. I can understand that  but I still wanted to go. So I pushed him a bit to do it and he finally agreed. Of course, before we left the house tonight, he was sitting on the couch, watching a movie and hoping that I would forget about it. Sorry, honey, but that didn't happen.

So, we went. And met some people of many different ages at varying stages of the disease. We were able to share a bit of our story and also learn the stories of the others in the group. It was nice to be able to talk to others living with the disease but also to the friends and families of those who are dealing with a loved one in the midst of the disease. It is a good reminder that we are not alone. There are others that are facing all of the ups and downs that we are dealing with, too. My simple comment of we finally got his brother approved for the disease was met with the knowing smiles of people who have faced that fight themselves. It was easily understood. 

There was also a social worker who works part time for the Huntington's Disease Society of America and knows a lot of information about the disease and what avenues to pursue when looking for care for someone with the disease. She was able to make some suggestions about how to go about finding Bill the necessary care that he needs. She gave us some phone numbers and some different ideas of how to go about finding the right place and paying for it as well.  So, it was a very worthwhile expedition for us tonight.

I am glad we went. Not just because of the information we received but because of the potential friendships that we have begun to build with people that understand the varying aspects and battles that we fight. All of our friends are great when we explain about the disease and are very understanding and accepting of it all and we truly appreciate each and everyone of them. But it is nice to be able to discuss symptoms of the disease with someone and not have to provide detailed explanations of it. When I say that Bill's cognitive ability is diminishing they can all immediately relate and understand with little explanation as to how. 

For that reason, I want to encourage anybody who is struggling with something - HD, death of a loved one, cancer or whatever else it might be - to look into a support group. Having people around that are struggling like you in a situation can often help make it easier to discuss since they have been there or are there right now. It might mean stepping out of your comfort zone, but it is worth it. Just ask Robert. For as apprehensive and uncomfortable as he was about going the first time, he must want to go back since he volunteered us to bring the snacks when we meet next month. 

Why He Can't Stay With Us

Now that he has some money coming in, we are in the process of finding a place for Bill to live. Someplace other than our house. However, that is not as easy as it sounds. It needs to be a place that somebody will interact with him on a regular basis. A place nearby that allows Robert to check up on him a few times during the week. Ideally, an assisted living facility would be our first choice. This way, there is a person there that can remind him to shower on a regular basis and to put on clean clothes. If we cannot find such a place, maybe one of those weekly hotel places that offer a discount because he would be staying there for several months. That way Robert can check on him every so often to make sure he is doing okay. And these places are not easy to find in the price range that we need based on the amount of money he will be getting. I just hope we can find something fairly quickly. I am ready for him to move out of our house.

 I have had a few people ask why he can't live with us or another family member. There are many reasons for this.

Anybody that has has a family member stay with them for any length of time knows how stressful it can be. And if that family member does not get along with your spouse, it makes things even more difficult. And Bill and I do not get along very well at all. And as much as we try to get along, we seem to butt heads.  This is stressing my husband out.  Which leads me to the second reason.

This whole thing has caused Robert a lot of stress. And stress for Robert is not good. Even though he shows no outward signs of it today, Robert has HD, too. I have the results from the doctor to prove it. We all firmly believe that the stress of her divorce is what caused Debbie's symptoms to flare up almost out of nowhere. And since her stress level has decreased, her symptoms have lessened considerably. So, I am a huge advocate of reducing the stress level my husband has to deal with. As his wife, I am supposed to care for him and help him deal with whatever life throws at him. However, I can do nothing about the stress of Bill living in our house. I cannot make that go away without removing Bill from our house. So, in the best interest of my husband, I want Bill out of my home. I want to keep my husband around as long as possible and this is just one way that I can possibly add a year or two to the amount of time I have to spend with him.

Next, I didn't sign up to be Bill's caregiver and I honestly do not want to do be one for him. Now, don't get me wrong! I did sign up to be Robert's care giver and will do it when the time comes, but I do not have it in me to take care of his. Robert feels the same way. Nor do I want Robert to have to do so because of the stress I have already mentioned. Plus, I also know that it was hard on Robert to help care for his mother when he visited his brother because he knew that would be him at some point down the road. To ask him to care for his brother and knowing he will face the same outcome is not fair to him.

Plus, Bill is the type of person that refuses to listen to anybody - be it a doctor or a family member about things that will make his life easier. Medication and doctor visits are a good example of this. He doesn't think he needs to go to the doctor because there is nothing the doctor can do for him. He has also made it clear to anybody that will listen that he will not take any medication of any kind. While these two issues are not huge factors today, as time goes on, they will be. And I can't fight him and force him to do something like this against his will.  I am not strong enough to force him to do it. Nor do I have the desire to do it. And I do not want to put Robert in a position where he has to fight his brother to do these things.

Then, we cannot ask any of the other siblings to care for him. Craig already spent the last five years of Cheryl's life caring for her. He is just now being to obtain a normal life again. Not to mention that he and Bill are at odds every time they see each other for any length of time. But, even if they did get along, it wouldn't be fair to him to have to live through that whole process again.  Kevin has four kids of his own and is considering expanding his family. So, he doesn't need to be taking care of his brother, too.  Finally, Debbie is in the midst of living with the disease, too. It would be unfair to ask her to care for him for the same reasons that it is unfair to ask Robert to care for him. 

So, as you can see, it is in the best interest of everyone in the family to find an assisted living facility that would be more equipped to care for him today and into the future as well. We aren't doing it because we don't care about him but because we want is best for everyone involved, not just the one person.  At this point, we are placing it all in God's hands to help us find the right place for him and do what is best for everyone in the family.