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.

Victory!

With the passing of Robert's grandmother taking place a couple of weeks ago, I haven't had the chance to give an update on the situation with Bill and Social Security.

To begin with, a couple of weeks ago, we got a letter detailing the judge's decision.  She agreed that Bill was unable to work and would be awarded disability income. Woohoo! Secondly, she said the date he became disabled was a date in 2004.  Basically, she said he was unable to work for nearly 7 years. So, the next question was how much he would get in the way of back pay.  For that, Bill and Robert had to meet with the Social Security office to determine the amounts he would be awarded.  This is where the whole thing got a bit frustrating.

It started when we got a letter from their office saying that Bill and Robert needed to come to their office on at 2:30 on Thursday, July 12th.  And they needed to bring any pay stubs that Bill had dating back to October of 2010 - when he first applied for Social Security.  Hello people! He filed because he can't work - how is he going to have any pay stubs for that time if he couldn't work? And, considering that Robert got this letter the Thursday before he was to meet, there was no way he could get the day off since the schedule was already written. It did say he could call to reschedule and so he figured he would do that first thing Monday morning since he would be too busy at work to call them on Friday.

Now, fast forward to Sunday.  We got the call that Robert's grandmother had passed so there was no way they could possibly make it on Thursday since that was the day of the viewing and the funeral was on Friday, in Cleveland.  So, Monday morning, Robert calls the number.  And waits on hold for over half an hour! He finally had to hang up because he needed to make some other phone calls so we could make arrangements to head off to Cleveland.  Very frustrating to say the least.  He finally got a hold of them on Tuesday morning and explained the situation - we were in Cleveland and wouldn't be able to make it on Thursday.  The lady he talked to made note of it and said it was no problem.  They could just come in whenever and it would be taken care of. The lady must have forgotten to update the appointment notes though because they blew up both Robert and I's phone during the viewing because Robert and Bill missed the appointment. It was a bit of a pain to say the least.

So, Robert and Bill finally get to the office last Monday. They were taken without an appointment which was very nice. However, I am not sure they had it all together. Robert and Bill were called to an office to meet with someone only to be told that everything wasn't ready and sent back to the waiting room to wait some more. Finally, after a couple of hours, they were called back to the office a second time where details were given - or at least some details.

First, Bill will get a check in the amount of $590 a month.  Much better than what we were originally told - around $300 a month. Secondly, he will get a second check each month - SSI.  But nobody would tell us that amount.  So how much is it?  We hope to find out next week when he get the first check on August 1st.  Third, he will also be getting back pay. And it will be in 3 lump sum payment checks.  One in the next few weeks, one 6 months later and one 6 months after that.  But they never gave the actual amount.  Only the amount of the fist check. The only thing that was really said about these checks is that the fist 2 would be direct deposit and the last one would be a paper check because it was too big to do direct deposit. However, it is hard to make plans for his future if we do not know the full amount of money he will be getting on a regular basis or if the lump sum checks will be enough to buy him things like the new clothes he needs as well as furniture for wherever he will be moving to.

The best news of the day, though, had to do with Medicare. Normally, when applying for Medicare coverage under the diagnosis of HD, a person has to wait 2 years before the coverage kicks in after being approved for Social Security disability income. However, because he had been waiting so long for approval, his Medicare Coverage actually started July 1st.  That is great because that means he can begin some of the necessary medications and treatments to help him live a more comfortable life as he progresses in his disease.

So, we got some great news! And now, we can begin the process of finding Bill a place to stay. Preferably a place that will offer assisted living for someone on a fixed income so that the can be checked on on a regular basis and be provided any extra help that he might need. The social security office did provide Robert with a place that might be able to offer assistance so that we can move forward.

In Memory of Margaret Land

Last Friday, July 13th, we had to say good-bye to a dear, sweet lady who touched more lives than any of us could count. Robert's grandmother, Margaret Louise Wagauman Land was born in 1924 and graced this world with her precensce for 88 years went home to be with the Lord on July 8, 2012.

Besides giving birth to Cheryl who in turn gave birth to my wonderful husband, she had an impact on the lives of many more. Meg as she was called by her sisters and brothers was one one of 11 kids in her family of 7 girls on 4 boys. As she was born in 1924, she grew up during the days of the Great Depression so times were tough through the years but the family survived. Her sister Peg told a story of the kindness and love Meg had for her family during these lean years. It was nearing Christmas and thier parents didn't have a lot of money to buy presents that year. Especially for 11 kids. So, Meg began buying dolls and doll clothes for her sisters to put under the tree. Peg happened to see them hidden in Meg's closet so she knew where the gifts came from. But, her sister Delores made the comment that she remembered that Christmas but never knew where they came from. And that was the way the Meg wanted it. She prefered that nobody knew where the dolls came from; she just wanted everybody to be happy and have a wonderful Christmas.

She married her husband, Peter a few weeks after her 19th birthday. They had 3 children - Jeff, Cecilia (Cibby) and Cheryl (Robert's mother). They were married for 37 years before Peter succumbed to the symptoms associated with Huntington's Diseasse. It was passed on to Cheryl and in turn Robert, Debbie and Bill. After Peter passed away, she never remarried. She never even dated again. She felt Peter was her one true love and there was no need to look for another one. She continued to live in the little house they had bought in Euclid, OH until she was in her 80's. She finally sold it about 5 years and moved in with her daughter Cibby where she remained until that Sunday a week ago.

She was a devout Catholic and went to church every week until she reached the point where she could no longer drive herself. She took her beliefs seriously and it impacted everything she did. She lived life to the fullest and enjoyed it even when she was dealt a rough hand of cards - which included losing a husband and a daughter to Huntington's disease. She was a ball of fire, and loved her family above all else. She was about 4 foot 11 or and loved to let anyone know how she felt about any number of issues from how biased FOX News was to her views on divorce and second marriages and any other issue that you might want to discuss. Sharing her opinion was never something she would sh away from. In fact, her and I went around a few times about our differences on a lot of different topics.

Her family was the most important to her up until the end. It was obvious in her commimentment to care for her daughter even when it became difficult to do so. It was even obvious up until the final days of her life. In fact, she told her niece, Terry, just a few days before she died that she couldn't go because she didn't want to leave Cibby alone. She kept saying that she needed to be there for Cibby. It was only after much convincing from Jeff and Terry they would care for Cibby that she decided it was okay to join Cheryl in heaven.

Margaret Louise Waugaman Land was very special lady and she will be missed by many but we all carry her in our hearts wherever we go. She touched many lives and we are all better for having known her.

We love you and look foward to seeing you again in heaven.

Understanding The Side Effects

Something that Robert and I are learning the last few weeks is that it is important to be aware not only of the symptoms ann how they compare in relation to whatever the ilness might be, but also to the side effects of the medications that are being prescribed to you. We already know that the leg movement in Robert is most likely restless leg syndrome. Like the doctor said, without the blood test, he isn't going to give an "official" diagnosis but he was willing to bet his life on it. Especially since the symptoms match up with RLS and not HD. The medication that he was taking did nothing for RLS and never will. The doctor suggested that Robert go back to his original doctor and request a change in medication. Mainly because this one has some unpleasant side effects and can be highly addictive if used for the wrong purposes. Since Robert was only taking one a night to help him sleep, he was fortunate enough not to develop an addiction to it. But after some research, we began to realize that he is experiencing some of the unwanted side effects and it is having a major impact on his life. Depressed thoughts, angry outbursts, more vivid hallucenic type dreams and even memory loss are just a few of the side effects that are experienced by people taking this particular medication. For the last year and a half that Robert has been taking this medicine, he has been dealing with each one of these side effects in spades. At first blush, we assumed that it is just a result of the HD begining to set in, so we didn't put much thought into it. The symptoms are what they are and there is nothing we can do about it. But, for the most part, HD is a gradual thing. It shouldn't cause the type of changes in a person that Robert has been dealing with almost out of no where. And, they have only begun to this extreme since he began taking this medication. I am not saying he was never angry, a bit down or that he ever forgot anythng. That is normal, but it seems to have increased drastically since he started the medicine that is supposed to help him. So, Robert has decided to stop this medication. In just a few days, he has noticed an improvement in his mood and his tempoer. It seems like this medication must have been affecting him in some way after all. Which is why it is important to really read up on any new medications that you are given by the doctor and understand what the potential side effects are. Does the benefit outwiegh the side effects? Is it really the best possible treatment or is there something else that can be used to help with the current problem? We put a lot of faith in the doctor to know what is best for us, but they don't always give us all the facts. Unless we ask, the full range of side effects are not always shared. And when you are given a medication after the wrong diagnosis, there can be even more negative repercussions. For me, this is a lesson learned and I will be much more cognizant of what types of medication both Robert and I are being prescribed. As time goes on, I will have to be the advocate for all of Robert's care and I would hate for him to have haullicinations and be unable to explain it to me. If I was seeing crazy stuff and couldn't articualate it to someone, I would probably go crazy. So, pay attention to the medications that you and your family have been given by the doctor. Weigh the good and the bad carefully and decide if it is worth the side effects that might be caused. For us, at this moment in time, this medicine is worse for Robert and the negatives outweigh the benefits - especially when it was prescribed for the completely wrong reason.