Do you smell smoke?

As many caregivers know, we have our ups and our downs, and some things that just make you want to rip your hair out. My brother, Bryan, has been smoking easily since he was about 13. I remember the arguments with my parents and the fact we just could not get him to stop stealing cigarettes, buying them from other kids that shouldn't have had them and so on. Now Bryan is 26 going on 27 in a few months, and I am trying the unthinkable, to get him to stop smoking. My dad was a smoker, my mom, stepdad, grandfather and myself are all smokers, and we know how difficult quitting can be.

Bryan has managed to turn a cigarette smoking addiction into what seems like none other than a heroin addiction. He scavenges the house looking for cigarette's, steals them from wherever he can find them, and even has stooped to smoking any cigarette butt he can get his hands on to the point of crawling underneath the porch on his hands and knees to find enough remnants for a puff.

With HD comes OCD, I wish his version was the kind that likes to do dishes and clean the floors, but instead he has the kind where he will wobble from one end of the house to the other and back, in and out every single door, breaking into vehicles and the shed to find nothing in general, unless he's on a mission for smokes. In any normal non-HD situation this would be mildly annoying, but in our household it has become the bane of my very existence. I am screamed at over cigarettes, "I HAVEN'T HAD ONE IN AN HOUR!!!" "GIVE THEM TO ME NOW!" "I NEED IT, I'LL DIE WITHOUT IT!" Both my mother and I get called every name in the book, which would be rude of me to list here. Not to mention he has been caught several times in the hospital while at HD Clinic in Albuquerque, smoking in the bathroom and being caught in several other areas of buildings smoking where he shouldn't be.

But, back to the struggles of being an HD caregiver. Bryan is not the only person with an addiction to cigarettes, and yes we're all smokers in this neck of the woods. If he can't then neither should I or any of us for that matter. With Bryan it is more than his smoking and frequent cigarette tantrums, it is the fact he smokes in the porch also that has us worried. He leaves lit cig's all over the porch, burning the wood, chairs and our plethora of animals. He has ruined every t-shirt and pair of pants he owns, not to mention he's burnt his face, hands, feet, arms, torso, and legs. We've contacted his PCM to try to get him some kind of prescription for the smoking cessation. A pill would be best, as with a patch I fear he would just pull it off when we aren't looking... Anyone else have to deal with this?

Keep Calm & Volunteer

Why do you do it?

What's the point? 

Who are you helping? 

What a waste of time.

Being a volunteer has been a lifelong journey for me. Once upon a time, this lady before you was once a cute freckle faced kid who wore a green sash covered in badges. Yes, I was a Girl Scout. My volunteering began long before I knew what a selfless act was, what it really meant to give, and why I was doing all I did regardless of the flare I wore across my chest.

My volunteerism started when I was four, helping the elderly cross the street, learning to sew, and selling cookies. Being a Girl Scout lead to helping serve food to the homeless on Thanksgiving and Christmas Eve, spending time collecting and delivering clothes to women and children in shelters, and so on.

When I was in high school I was a cadet in the Army Junior Reserves Officer Training Corps or AJROTC program. I volunteered my time to being the best of the best. I started a campus recycling program and crushed cans on weekends. I also helped at a local thrift store and food pantry, and spent time with younger kids telling them all about how wonderful it was to be a cadet.

Once in college and facing the life and cards my family had been dealt. I became a part of the local HD Support Group and helped with event planning, which has turned into a full-time volunteer job. With help from my family we run the support group and HDSA New Mexico Affiliate. We've held two bowl-a-thons, a Team Hope Walk, and countless smaller fundraising events and education days. Other endeavors we take part in is Toys for Tots, donating food and clothing to our local Salvation Army, Bethel Storehouse & Panty, and Hug a Horse Thrift Store. Our affiliate even donates food during Thanksgiving time and toys around Christmas.

I also spend much of my time on the NYA Board, working on several different projects to help youth's who are impacted by Huntington's disease. Helping children, teens and young adults like myself who are affected by such an awful disease makes me feel like I have a purpose. Knowing that it is not about me, but about the people I am able to help alongside fellow board members and friends is a gift in itself.

Do I get tired? Yes, of course I do. It's human nature. Do I push past it? Yes, of course I do. It's so much more than the thank you's. I don't know how I do it sometimes. Even when I am past the point of exhaustion, I still manage to get it all done. My advice is, volunteer. It pays back tenfold. The experience is more than anyone could pay. The feeling it gives you is like nothing else. Get out there and do something, be a part of the bigger picture, donate your time and your talents... Get involved with something, anything!

Steps 1 through 99

Let's just say the process to being paid to become a "part-time" caregiver is a long one... and rather confusing one too. Today I went into the agency that I will be working through to be Bryan's caregiver. I had to fill out all the basic new hire paperwork, W-4, I-9, application and so on... Plus, had to sign the paperwork in regards to safety, emergencies, daily care and figuring out how to do my time sheet. My time like I've said before is 22 hours per week, no more, no less. It breaks up to 4 hours on Monday's, and 3 hours each of the remaining days. How one could do all the necessary things for an HD patient in such few hours is beyond me, but I will take what I can get.

Some of the rules crack me up though, I must wear closed toe shoes, not have my tattoo showing, and need to be dressed as a caregiver would, scrubs aren't necessary, but I could wear them if I wanted. Must I remind you my mother, father, brother & I all live together... (Yeah, it was strange for me too). Also, as a caregiver I am NOT responsible to take him to medical appointments during my time on the clock, nor can I give him his medication...? The best one was, I cannot help with household chores or activities such as feeding the animals, watering plants, or yard work...? So in 3 hours a day I have to prepare his meals, do his laundry, and clean his living room/bedroom or at least make sure it is safe for him to be in the house which we have lived in for 11 years. I also had to have my background checked, and finger prints taken. While I cannot take him to medical appointments when I am on the clock, his insurance has me get a prior authorization number, mileage and time before taking him to and from his doctor appointments in order to be reimbursed for gas (doctor appointments are approximately 45 miles/1 hour from where we live). The agency does not provide me supplies other than standard medical rubber gloves, and if he needs any supplies for the home, rails for his bed, a new shower chair and the like. While insurance covers briefs if/when he needs them and "chuck" pads only on alternating months, one month briefs and the next chuck pads.

I do have to turn in my time sheet every other Monday before noon, 55 miles from home. So during the 8 A.M.-Noon shift I am supposed to be watching him, I have to drive 55 miles to drop off my time sheet, when he cannot be in my car with me, but I am supposed to be care giving during that time. Are you lost yet? So am I. It is a very strange process to go through, but I'm certain that I will get it figured out soon enough.

On an even more personal note, while going through this process I had to have a chest x-ray to check for Tuberculosis. Well, that came with it's own hoops to go through. As a caregiver you have to have a T.B. test done, which I cannot have because when I was 8 years old I got T.B. after my dad had come home from being out to sea. Him, me and 100's of other families on base drew the short straw on that one and unfortunately got  T.B. Well, after receiving my x-ray results today while filling out all my paperwork, the results had a side note that had me raise my eyebrows a little higher, it was found in my x-ray that there is a dark mass/spot/shadow on my lymph nodes. Because dealing with HD isn't enough, right? So I have an appointment next Thursday with my PCM to have them look me over and I'm sure do another chest x-ray and go from there on finding out what it is, and if there is anything that needs to be done about it...

We have HOPE as an anchor for the SOUL, firm and secure.

"We all carry these things inside that no one else can see. They hold us down like anchors, they drown us out at sea..."

This is my new and finished tattoo, to some it may just be another tattoo on a girl of an anchor with some flowers, but to me it is my family...

The anchor, being my mother who has always been the strength and courage in my life, my life as a Navy Brat, and my father's service to our country.
The blue rose, my father, a symbol to me of Huntington's disease, to the beauty in our lives despite the ugly times we have had.
The purple rose, my brother, a symbol to me of Juvenile Huntington's disease, the love I have for Bryan.
The rope, my HD family, my friends who are part of my Huntington's journey.

Tattoo completed by Shaylee San Miguel, Rio Rancho, NM "Three Guns Social Club".

Bryan's Story

 

"My caregiving journey is challenging, but I do not journey alone and my best is enough..."

Today's journey has been a little of everything, started my day with my grandfather "Papa", taking him to his eye appointment 45 miles away from home. Then returning back home to clean up the house a little before mom got back from her appointment where she learned she had a fracture in her foot... Just our luck. While we were gone a family friend sat with dad and Bryan to watch them, make sure they were safe and fed them lunch, our "respite" care. 

I called my brother's insurance caseworker to set up his care plan meeting for Friday. While on the phone with her she let me know I had been approved by the insurance company to care for Bryan and be paid for 22 hours of care per week. The way I learned of this program, the PCO Program, was through my father's hospice Social Worker. Bryan has medicaid and medicare, and with the type of medicaid he has we were able to get into the PCO Program. With that said, we had to set up a phone call with the insurance and answer 101 questions, then they sent his caseworker to the house to answer another 101 questions between him and I. To go through this process we also chose to go through my father's hospice, once being approved the insurance will pay the hospice, who then pay me to take care of my brother. The process is a little strange. Hopefully in the next couple of weeks I will receive my first check, which since leaving my job is much needed. I don't have a lot of expenses since I do live at home with my family and no longer drive 50 miles to work each day, but I still have the few odds and ends that I do need the pay for. 

As much as we have a "schedule" for how we do things in our house, caregiving for both my dad and brother. There is much we need to put into action and make sure we keep on top of so we don't become so overwhelmed. I know I need to work on going to bed and waking up at decent hours, but if mom can focus more on dad, even with her now bum foot, I can only hope to get Bryan on a better schedule. He hates to take showers, brush his teeth, or even change his clothes. All parts of the hygiene that go right out the window with some HD patients in the mid-stage of the disease. 

I feel this blog is going to have it's days where it becomes the horror stories of being a home caregiver for an HD patient. But remember, Bryan was diagnosed with JHD. It has a different set of "rules". My dad has always been relatively laid back and easy going through his progression. Yes, he had his bad days, bad moods, tantrums and depression, for the most part though he was always accepting of his diagnosis with HD. Bryan on the other hand, well he's a different story. 

I was a Sophomore in college at the University of New Mexico, 19 years old, when Bryan was diagnosed. He was just 22 years old. He had a lot of trouble growing up, mostly being diagnosed with ADHD during it's height in the early 90's, now looking back it was JHD showing it's ugly self. Bryan always hung around the wrong crowd thinking that he could fix them if he could just get through to them. He got sucked into cutting class, drinking, doing drugs and partying in his early teens, which was the same time my dad was diagnosed with HD. When he was 17, he was beaten severely by a gang of people at a party and had bleeding on the brain, cracked ribs and his face was battered beyond recognition. From this Bryan dropped out of high school as he was tormented each day. After turning 18, he was in and out of jail for different things, but once he turned 22 and released from jail the last time he returned home to my mother's house and began N.A. treatment, which I went to every meeting with him (I was a Psychology major, I thought I knew my stuff...). Once he was clean and sober we saw subtle signs that we recognized from my dad when he began to show symptoms of HD. Bryan's fingers were twitching, so were his toes, and his arms began to move subtly. We knew something was wrong, thus the process to test began. 

With our family history of HD, it was a much different process for Bryan to get tested. Already symptomatic there were steps that he did not have to take or was not put through like those who are going through pre-symptomatic testing. He did a session with genetic counseling, met with a neurologist and had his blood taken. A few weeks later after getting out of one of my classes, just up the street from where he was receiving his results with my mom and grandmother. My mom called, crying hysterically "Bryan has JHD, he has it!" I stopped in my tracks from and to class and began crying... thinking to myself "now what?"

We began attending the only HD Support Group in Albuquerque, at UNMH. My mom and brother went to a few meetings, then I started to attend after I got out of class. It helped, helped us know we were not alone in our struggles with HD/JHD. That we were not by ourselves in this rickety boat. From that point I became much more involved in HDSA and became a member of the National Youth Alliance. I needed to dive in head first and be a voice for my dad and brother, and still to this day am deeply involved. 

Bryan is my brother, he is my older and only sibling, some days I can't stand what JHD has done to him, what his rough teen year's turned him into, and the life stories he has that I will never know... He struggles every day with the cards he has been dealt, though he says he is not depressed, I wonder what he thinks (he does not talk about his diagnosis), what he feels, what his body is going through... I am his sister, his voice, his advocate, and his caregiver.

A Change in the Wind

My life has changed exponentially over the past few years I have had my little blog here online. I have shared my families stories and struggles, and the demons that I have battled with. I have shared my fears and inspirations and invited you all to take part in our local events as donors.

Recently, I have had another emotional and life changing experience when I left my job to stay home and take care of my father and brother who have Huntington's disease and Juvenile HD. As I have been a caregiver since I was a pre-teen, I never identified myself as such. I always saw myself as the child of a parent with HD, as a person who was 50/50 at-risk for HD, someone who one day would be sick with HD myself... Well, last year I tested negative to Huntington's disease, and since then have been battling what that means for me. In the meantime, I've moved home with my family and have begun a different chapter in my life.

Identifying myself as a caregiver is completely different than just being the daughter taking care or her dad sometimes, or the sister who helps her brother out here and there. I spend 24/7 cleaning, feeding, batheing, doing chores, looking after the pets (8 dogs, 4 horses, 3 goats, 1 guinea pig and a fish)... I try to explain to friends and family about the struggles of being an HD caregiver, I really have no clue how my mother's been doing it all these years alone.

The physical, mental and emotional stress you go through in a 24 hour period in itself is exhausting... My wrists hurt from picking up dad, setting him down, getting him in his lift and of course loading bails of hay. My back aches from leaning over his bed to clean him, sitting up to feed him, and sometimes myself. My brain is exhausted from caring for my brother with JHD who, once he wakes up at 3 A.M. is running at 100 MPH until he crashes out, or the sun is coming up the next morning and mom and I are running on empty.

Yes, I've helped in the process through the years in the caregiver needs of my father and brother. From issues at the nursing home, to hair cuts and shaving their faces, making sure they were cleaned and well fed. But, this is on a totally different level. It is much like care-taking for a kindergarten class, yes it's possible, but is it easy? No.

Trying to explain it, does not even begin to describe the daily rituals we go through. Bryan, having much of the aggression, OCD, and behavioral issues along with much of the chorea (movement) everything is a battle. His doctor always says, "pick your battles", but with Bryan everything is a battle. He can eat between 7-15 times a day. Smoke countless cigarettes given the opportunity, and "walk" or stumble through the house while dragging his feet from one side to the other another 150-200 times in a day. Exhausted yet? No, you can't be. You still need to take care of dad, make sure all his needs are met also, 3-4 meals a day, no cigarette breaks, but snacks, coffee and candy are the most important parts of his day. Have you showered or eaten yet? Nope, but now it's time to shift your attention to the animals and livestock, make sure they all have food, water, treats and cookies. Ok, where were we, oh yeah your shower, wait there's dishes in the sink, now lets do some sweeping, oh there goes the laundry timer, fresh towels! JUMP IN AND OUT of the shower, a military bootcamp style shower. Before you even have time to dry off, dad is trying to wiggle out of his chair while brother is yet again demanding either food, drink or cigarettes, maybe all three...

People ask why I do it, how I could give up whatever my plans were to stay at home with my mom, dad and brother to spend my entire day and night with HD... I have the next 50+ years of my life to work in the real world. Maybe it is my survivors guilt, or perhaps I'm not ready for the real world yet... I find the stress and the tantrums are far less important when my dad is having a good day, smiling, laughing, and talking, and when Bryan has a moment of peace, when his body is relaxed and he can enjoy a day in the shade of our barn without JHD flaring up.

We were all born for a reason, and I am here for them.

HD Caregiving 101- 11 Things to never say to an HD Caregiver...

1. "Why are you having such a hard time being a caregiver?" Usually voiced by someone who has never been a caregiver for an elderly or ill loved one, this question can be very difficult for a caregiver to hear. As Laverty points out, it effectively takes their role of providing care for a loved one, and diminishes it.
2. "Gosh…we haven't seen you in such a long time. Why don't you get out more?" Though it probably comes from a place of love, Laverty points out that this can be an unproductive way to express concern for a friend or family member who is a caregiver. "The truth is that most caregivers do need to get out more, but this is an insensitive way of saying it," she says.
3. "You look really tired. Are you making sure to take care of yourself?" Caregivers generally have a good reason for looking tired and haggard—because they are. "The biggest issue for caregivers is that they tend to sacrifice personal care—it's the first thing that goes," Laverty says. Caregivers look tired because they are not getting enough sleep, they spend their nights worrying and making sure their loved one doesn't wander. But, that doesn't mean that they appreciate having that fact pointed out to them.
4. "Caregiving seems like a burden. You shouldn't have to sacrifice your life for your mother's." Caregiving is hard. That's why so many people, both caregivers and non-caregivers alike, refer to it as a ‘burden.' But, according to Laverty, when a friend or family member likens caregiving to a burden, what they're really telling the caregiver is that they aren't handling the situation properly and that this isn't what they should be doing with their life. "Caregivers get into their role because they started out as loving, caring people trying to do the right thing," she says.
5. "You need to get a ‘real' life." As the old saying goes, ‘you're preaching to the choir.' "Every caregiver understands that they need to get a life, have a plan, start making time for themselves," Laverty says. But, telling a caregiver to ‘get a life' is like telling them that what they're doing now (caring for a loved one) doesn't matter.
6. "Why don't you just put you mother in a nursing home? It would be better for everyone." Laverty says that comments like this can make a caregiver feel like they're not doing a good job taking care of their loved one. The reality is, a nursing home might not be financially feasible, or a caregiver may be trying to keep their loved one at home for as long as possible. Outsiders think they're offering good advice, when they might really just (unintentionally) be making a caregiver feel guilty.
7. "Why do you visit your dad so much? He doesn't even know you." If a caregiver is taking care of someone who has Alzheimer's or another form of dementia and lives in a nursing home, people may ask why they bother to visit someone who doesn't even remember who they are. "People need human contact and love, or they will just shrivel up and die," Laverty says, "Caregivers shouldn't feel stupid for going to visit someone who doesn't recognize them outwardly. As long as they know who their loved one is, that's all that should matter."
8. "Don't feel guilty about…" When you're a caregiver, "guilt just comes with the territory," according to Laverty. Caregivers want to fix everything, to solve every problem, to ease every hurt, when the reality is that no one can do it all. When people tell a caregiver not to feel guilty about something, it can make things worse by bringing that guilt to the forefront of their mind.
9. "Let's not talk about that. Let's talk about something happy and fun." When it comes to your average small talk scenario, caregivers generally don't have a lot of "fun" things to contribute. Laverty says that people need to understand that people taking care of an elderly loved one need to talk about what's going on. Friends and family members of caregivers should take the time to listen to what a caregiver has to say, no matter how ‘unpleasant,' or ‘unhappy' it is.
10. "You must be so relieved that it's over." When their elderly loved one dies a caregiver is likely to be facing a bunch of mixed up emotions. Relief may be one of those feelings, but Laverty feels that it's probably not productive to point this out to a person who has just lost a parent, spouse, or sibling. "If you diminish the event, you diminish the life and effort of the caregiver," she says. 
11. "When are you going to get over it (a senior's death) and move on?" Grief is an individual process. For some people, processing the death of a loved one will take some time. This is particularly true of caregivers, who've poured a significant amount of time and energy into taking care of the person who has just passed.

From AgingCare.com