I'm an expert, not a novice.

Well, here it is. The blog to end all other blogs! If you did not know, which you probably didn't, Bryan has been in the hospital since 9/25. My mom and I had taken him in for his HD Clinic appointment, (he goes once every three months) where he is supposed to see a Neurologist, Psychiatrist, PT, OT, and Nutrition. His appointment was set for 8:40 AM, we arrived at 8:20 AM and all seemed well, besides the nearly 10 other families who were scheduled for HD Clinic all at the same time to see the same exact doctors. So just after 8:40 we were taken back to a waiting room, where we spent over two hours sitting in our room with Bryan before being seen by anyone from clinic... Caregivers down the hall becoming desperate as HD loved ones began to lose patience and began walking the halls, cursing at their caregivers, and becoming extremely agitated. Finally, my mother had had enough and went to locate anyone who could speed up this process, only to be laughed at by the girls at the front desk of the Neurology Clinic...

After some more waiting, finally his psychiatrist arrived to a room of two emotionally, physically and mentally exhausted women and of course, Bryan. Begging and pleading for help she said she needed to make a couple calls and she'd be back. Ten minutes pass and a nurse comes in to tell us Bryan will be admitted into the psych hospital just behind UNMH for evaluation. So we get Bryan back into the car and around the hill, just to wait a little longer and get Bryan admitted, at this point no one can tell us how long he will be there, if we needed to wait around or what the next step was.

Now let the drama begin! Issues began on Tuesday, Bryan still at the psych ward... My mother and I received a call from a random woman whom we've never met saying that Bryan was being discharged the next day and was going to be moving into a group home that her friend runs, yet was unable to give us her friends full name, address or phone number...  We then panicked and called Bryan's caseworker at UNMH to find out what was happening and why no one called us to tell us anything. The next day (Wednesday) mom and I marched into the UNMH psych ward and met with his new psychologist, caseworker and a med student to go over what we were dealing with at home with Bryan. They began to give us the basic head nods and stares as though my mother and I knew nothing about HD/JHD and what it does to a patient, because apparently as they said Bryan was their first person with HD, but they had overnight become experts on his condition.

The meeting went on and on, finally putting them in their place that we were in fact knowledgeable about HD. His caseworker began discussing the home which we had heard about the night before from the random woman, it's located in the South Valley, it's run by a man who only goes by his first name, they did not know his last name, phone number, or address either, but tried to reassure us they do a lot of work with him and this place was safe, oh but not licensed. You must be high... We were then told Bryan was competent, that he was able to make decisions in regards to his care and even thought my mother and I had been his caregivers, he was his own legal guardian and if we wanted to become his LG we would have to go to court which could take up to 18 months. Then we were told we were not legally giving his medications and would have to go to court at the hospital on Friday to become Treatment Guardians (TG).

What is a TG you might ask?
A person appointed by a court to make mental health treatment decisions on behalf of an individual who the court finds by “clear and convincing” evidence is not capable of making their own treatment decisions or informed consent.

But I thought they just said Bryan was competent and able to make his own decisions...? We tried to explain to the caseworker and psychologist that we had the Power of Attorney for Bryan and the Medical Advance Directive which both said we could be in charge of these types of things because Bryan was not able to do so for himself. Still they set up the appointment for court on Friday... After leaving this few hour long meeting we went to visit a friend of ours who is a Social Worker. We went to her office pleading for any help or advice she could offer us during this very confusing time. She told us to wait and made a call... The woman on the other end of the phone was very understanding and listened intently to what my mother and I had to say about what was happening with Bryan, why he was at the psych ward, where they were trying to dump him off, and so on... She runs a collection of LICENSED group homes that are looked over by managers and are staffed 24/7. Bryan would have his own room, be looked after, three meals a day with snacks, and have plenty of activities to keep him occupied. Could this be? This sounds awesome! And they are willing to take him ASAP!

Too good to be true was more like it. Friday we showed up the the Psychiatric Hospital for court in regards to Bryan's TG. Prior to his hearing we were approached by his newly appoint doctor who was under the impression we were committing Bryan to the State Hospital in Las Vegas, NM and trying to become his TG. Then the DA came and told us a similar story and we showed him the POA and the Advanced Directives we had and began to tell it that seemed enough. Once we got into the meeting room where the court would be held we met Bryan's attorney, the judge, sat across from his doctor and the DA and discussed the legal paperwork we already had. The judge, DA and attorney were all confused as to why the caseworker made us go to court for something we technically already had... But, none of them were on the same page as us. They all believed Bryan was to be discharged and sent to Las Vegas, not that we were waiting to hear about the group home which we had already discussed with his caseworker.... Ball dropped.

We left and had a stressful and tense breakfast while waiting until noon to meet with the rep from this new and amazing group home we were hoping to God Bryan could get into. After a nearly three hour wait, we met with her and Bryan in the psych ward... Everything she was telling us was awesome! We were so happy and so was Bryan, he was excited to have his independence back and be able to live on his own. We left the rep there to talk to his caseworker about the next steps, Bryan was happy, and we were happy with this decision. Until twenty minutes passed and his caseworker called, she said the home would not be able to take him, that he had the wrong kind of insurance (not institutional medicaid) and would not be able to go there. Talk about a 180... What happened? She might as well have kicked us in the gut, are you kidding me?!

So now we wait, we wait to see what the owner of this home chooses to do as she has a meeting with Bryan's insurance Monday. We were supposed to return to the psych ward Monday for court again, for Bryan's commitment. But, the caseworker continues to go off and chooses to do her own thing finding more unlicensed group homes for Bryan to be sent to since he cannot stay in the hospital much longer and they are ready to dump him just about anywhere with anyone.

My issues with this process:
1. UNMH/Psych Hospital have no clue and not enough resources for what needs to be done.
2. No one anywhere talks to each other, not the caseworkers, doctors, social workers, court system...
3. Nursing homes, they will not take Bryan because of his age. Sorry HD doesn't choose an age over 50.
4. Group homes in NM do not have to be licensed, or run by individuals in the healthcare system. Nor do they have to be properly managed. And they do not need to have medically trained staffed on hand either.
5. What's the point in having or fighting for Medicaid or Medicare when you can't use it ANYWHERE!?
6. There aren't enough places for young people with disabilities or mental illness, which then causes the psych hospital to turn out people onto the streets.
7. I am an expert when it comes to HD, do not look down on me because I am not a doctor, I am not a novice, this is not my first rodeo, you are not the first doctor, neurologist, psychologist, caseworker, social worker or nursing staff I have had to deal with and I'm sure you will not be the last.
8. We want what is best and safest for Bryan, we wish that could be with us in our home, but unfortunately it is not at this time... We are involved in everything from picking out his clothes to taking him to his doctors appointments, do not push us aside like we don't matter and don't care for him, because that is not the case.
9. You do not live in our home, you have not cared for Bryan for five years through the progression of HD, and you do not see the way he is at home... DON'T brush aside the fact that he acts up, becomes aggressive, wanders off, crawls under the house, nearly lights the porch on fire, is up all hours of the day and night, or is constantly on a rampage of some sort. We have dealt with this much too long, with not only Bryan, but with my dad also. We are not new to HD like you are.
10. Do not dismiss our concerns. Do not make us feel like we are bad family members or caregivers. Do not make me and my mother feel like we aren't doing a good job or like we are giving up and going the easy way. Like I have said before...

I'm an expert, not a novice.

Patience is a virtue, or so they say...

Let's be real for a moment, sometimes the stresses of caregiving come down to those small things that no one else would really pay attention to or be bothered by. Maybe it's because I'm "new" to this whole caregiving situation, or maybe it's because I've been doing it since I was a teenager... I find the more daunting the task, the more I become frustrated with it. It would be easy for me to just let go and let God, but what does a caregiver do for themselves when everything seems like it's making them crazy?

I find visiting Caregiver.org to be helpful, for tips on being just that, a caregiver. There is no manual that comes along with you put your life and everything you do on hold for loved ones who are touched by a horrifically devastating disease, which they had no control over. I forget, this is not what we signed up for. None of us wanted these cards that we were dealt. With that being said though, how do we make it easier on ourselves rather than more and more difficult?

Caring for my brother, there is not patience from either of us. He is very much in the stage of "I want this now" "Do this for me now" "Get it for me now" "Make it for me now"... Whether it is 6:00 AM and I am still asleep, or if I am in the shower, or getting dressed, or at midnight. He doesn't mind when he asks me, just as long as it gets done for him at that exact moment.

I find as a caregiver I have lost a lot of who I am, but I do need to remember that my dad and brother have lost all of who they are or were... Caregiver.org says, "Caregiving can be tiring and stressful. When you're caring for others, it's easy to forget to care for yourself. While it may be difficult to find time to focus on yourself and your needs, it is very important that you do so to prevent frustration and burnout." Is this selfish? Yes, I do get breaks and am able to spend time with friends a couple days out of the month and switch off with my mom who is also a stay at home caregiver. But when I'm away I can't help but think she needs me home to help as I know how stressful it can be to do it all alone.

Caregiving.org suggests modifying your thoughts:

As you take time out to collect your thoughts, try rethinking your situation in ways that reduce frustration. How you think often affects how you feel. Of course, feelings of frustration arise from difficult circumstances. If, however, you analyze your response to a frustrating situation, you will usually find some form of maladaptive—or negative—thinking that has the effect of increasing your frustration, preventing you from looking at your situation objectively, or finding a better way to deal with it.
Below are six major types of unhelpful thought patterns common among caregivers. Following each unhelpful thought pattern is an example of an adaptive—or more helpful—thought that can be used as self-defense against frustration. Familiarizing yourself with the unhelpful thought patterns and the adaptive responses can help you control your frustration.
Over-generalization: You take one negative situation or characteristic and multiply it. For example, you're getting ready to take the person in your care to a doctor's appointment when you discover the car battery has died. You then conclude, "This always happens; something always goes wrong."
Adaptive response: "This does not happen all the time. Usually my car is working just fine. At times things don't happen the way I would like, but sometimes they do."
Discounting the positive: You overlook the good things about your circumstances and yourself. For example, you might not allow yourself to feel good about caregiving by thinking, "I could do more" or "anyone could do what I do."
Adaptive response: "Caregiving is not easy. It takes courage, strength, and compassion to do what I do. I am not always perfect, but I do a lot and I am trying to be helpful."
Jumping to conclusions: You reach a conclusion without having all the facts. You might do this in two ways:

1. Mindreading: We assume that others are thinking negative thoughts about us. For example, a friend doesn't return a phone call, and we assume that he or she is ignoring us or doesn't want to talk to us. Adaptive response: "I don't know what my friend is thinking. For all I know, she didn't get the message. Maybe she is busy or just forgot. If I want to know what she is thinking, I will have to ask her."
2. Fortune-telling: You predict a negative outcome in the future. For example, you will not try adult day care because you assume the person in your care will not enjoy it. You think, "He will never do that. Not a chance!" Adaptive response: "I cannot predict the future. I don't think he is going to like it, but I won't know for sure unless I try."

"Should" statements: You try to motivate yourself using statements such as "I should call mother more often" or "I shouldn't go to a movie because Mom might need me." What you think you "should" do is in conflict with what you want to do. You end up feeling guilty, depressed or frustrated.
Adaptive response: "I would like to go to a movie. It's okay for me to take a break from caregiving and enjoy myself. I will ask a friend or neighbor to check in on Mom."
Labeling: You identify yourself or other people with one characteristic or action. For example, you put off doing the laundry and think, "I am lazy."
Adaptive response: "I am not lazy. Sometimes I don't do as much as I could, but that doesn't mean I am lazy. I often work hard and do the best that I can. Even I need a break sometimes."
Personalizing: You take responsibility for a negative occurrence that is beyond your control. For example, you might blame yourself when the person in your care requires hospitalization or placement in a facility.
Adaptive response: "Mom's condition has gotten to the point where I can no longer take care of her myself. It is her condition and not my shortcomings that require her to be in a nursing home."
Using the "Triple-Column Technique": Unhelpful thought patterns are usually ingrained reactions or habits. To modify your negative thoughts, you will have to learn to recognize them, know why they are false, and talk back to them.
One helpful way to practice using more adaptive thinking processes is to use the "triple-column technique." Draw two lines down the center of a piece of paper to divide the paper into thirds. When you are feeling frustrated, take a personal "time out" and write your negative thoughts in the first column.
In the second column, try to identify the type of unhelpful pattern from the six examples above. In the third column, talk back to your negative thoughts with a more positive point of view.

I know sometimes it may seem like this blog is all about the frustrations a caregiver feels and is going through, maybe it sounds like I am complaining about the choice I made to become a stay at home caregiver, or perhaps I'm just venting to an audience that may or may not know what I am talking about or going through... I just want to be able to share my thoughts and story with you, my reader. Perhaps this blog will help you, or give you some view into the life of an HD caregiver. No one said it would be easy, but I must remember when I want to rip my hair out that patience is a virtue, or so they say...

The Entrenched Caregiver

From Caregiving.com

I am helping a family member or friend.
Who are you?
Your involvement with your caree is almost daily–if not constant. Your caree may live with you–or your involvement means that your day is structured to be available to your caree. You begin to wonder, how much longer can you live this way? Your mood is sometimes upbeat–you’re proud you’ve been able to provide such wonderful care and make decisions that support your caree’s best wishes–and sometimes melancholy–why you? You’ve been mourning the loss of your caree’s abilities and functions and often long for the days before caregiving. And, you’re tired.
Your Keyword: Receive
–Receive help–from anyone who offers;
–Receive breaks from caregiving;
–Receive support.
Your Challenge
To find the support and strength to continue.
Your Purpose
To develop a routine, create a familiar schedule for both yourself and your caree. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your caree–this stage may be the most difficult for both of you. The changes you prepared for in Stage I and II are now a reality–you have become something of a lifeline to a family member or friend.
In addition to your caree’s routine of care, create a routine for yourself. In your routine include: Time for the unexpected; a ritual which begins and ends your day; and a “healthness” activity that nurtures your spiritual, emotional, physical, mental needs.
As an “entrenched caregiver,” what can you do?
1. Determine your limits in your day and in your role.
How long can your caree remain at home? What’s your comfort level in providing care in your home? For instance, some family caregivers feel uncomfortable providing care when their caree becomes incontinent. Others determine they can provide care at home as long as insurance or Medicare benefits offset some of the home care expenses. Others feel they can provide care as long as their other family members, like spouses and adult children, will put up with it.
Just as important as understanding your limits in your role is recognizing your limits during your day. Consider:
–Which tasks and responsibilities feel like a struggle?
–What times during the day do you feel the greatest amount of stress?
–When do you find yourself running late, losing your temper, scrambling for a solution?
–What do you find yourself dreading or hating?
–When do you find yourself in a tug-of-war with your caree?
–What times of the day are tough for your caree?
–When during the day does your worry about your caree intensify?
When you understand your limits, you can look for help to manage what’s beyond your limits. Understanding your limits will ensure you, your caree and your family will stay in a safe place.
Everyone has limits. What are yours?
2. What are your caree’s limits?
Understanding your caree’s limits will help schedule your day and organize your help. Limits will change regularly, so be aware of change in tolerance and fatigue. Not sure how much help to schedule? Add more than you think. You can never have too much.
3. Continue regular breaks.
Consider annual weekly breaks–investigate short-term respite stays in your community’s nursing homes. Or, ask relatives to take over the caregiving role for a week or two every year or every two years. Continue to take daily, weekly and monthly breaks. Keep up with your own interests and hobbies as best you can. Take time to enjoy the paradise you built in Stage II.
4. Use your Solutions Fund.
Make deposits and take withdrawals, using the money for boredom, breaks and back-up plans.
5. Keep up with a support system–a caregiver’s support group or empathetic and understand family members or friends.
6. Continue to learn about your caree’s illness or condition.
What’s next for your caree? Are you up to the next steps in his or her illness?
7. Increase help as your caree declines.
Become comfortable with adding more help as more help is needed. You may think, “I’m okay keeping the level of help as it is.” Unfortunately, keeping the level where your caree was rather than where he or she is will hurt both of you. Note the struggles in the day, then work to add help for you and your caree to manage the struggles.
8. Manage the budget as much as you manage the care.
As care needs increase, so does the budget. When you caree has funds to pay for about 18 months in a nursing home, then take note of the situation. This is the time to consider nursing home placement, when your caree’s funds will afford the best choices. Hold a family meeting, tour local facilities, consult with professionals, such as a geriatric care manager. You may decide this isn’t the time to decide. That’s okay. It’s important to be aware that sometimes the budget determines the decision on where a caree continues to receive care. It’s most important to be aware of your choices and to make the one that’s right for you and your caree.
If you care for your spouse and consider nursing home placement, know that a certain amount of your assets will be protected and that you will not have to deplete all your assets to pay for your spouse’s care in a nursing home. Visit Medicaid.gov to learn more.
9. Continue writing in both journals—yours and the other about your caree.
10. Forgive yourself for your bad moments and bad days.
They will happen. After they do, give yourself a clean slate to start over.
11. Set boundaries which protect: Your Time; Your Values; Your Well-being, Your Priorities; Your Self.
Examples of communicating boundaries include:
–“I’m taking a two-hour break after lunch. I have everything that you’ll need set up in the living room. Thank you so much for helping me enjoy this time. I’m so grateful for your support.”
–“I’m uncomfortable with the tone of our discussion. Let’s table our talk until tomorrow.”
–“I’m booked, so can’t handle that request. Thank you for thinking of me.”
12. Give you and your caree room for your difficult moments and bad days.
When you’re having a tough time, simply say: “I’m having a bad day. I’m taking a few minutes for myself.” When it’s your caree’s turn, say, “I’m sorry you’re having a bad day. I’m going to step away for a few moments.”
13. An apple a day…
What’s your apple in this stage? You may feel tempted to sacrifice your apple in this stage. Your apple can’t be sacrificed. Your apple is what makes you feel normal, like yourself. Keep it.

Don't throw stones if you live in a glass house.

As you may know, not only am I my brother's caregiver and a helper with my dad, but I am also the Chair for the HDSA New Mexico Affiliate, Peer Leader for the support group, and local Advocate for the HD Parity Act. Recently, my family has gone through a "break-up" with who we thought was a close friend who is also an HD caregiver.

When a caregiver verbally attacks another caregiver, you cannot help but think that perhaps they are having "one of those months", but to go past and continue the torture by writing an open letter to our family about how pathetic, cowardly, and selfish we are I have to put my foot down.

Since 2009, when Bryan was diagnosed with HD, we have dedicated our lives to helping local New Mexican families with HD/JHD through support, education and awareness. We had taken it upon ourselves when others stepped away to step up at lead the support group or it would be lost to all those who needed it. We've brought our very own HDSA recognized affiliate to the state, something we had never had before. Why is this important, because for the first time New Mexican's (PHD's, family members, caregivers, spouses, at-risk, professionals, and doctors) had volunteers in the state who are dedicated to making the lives of New Mexican's better while they struggle with HD.

We have donated 100's if not 1000's of dollars and hours of our own time to provide education days, go through training seminars, webinars, and conference calls to be better at what we do. And each time it felt like it was too much to deal with, go through, and put up with we kept going. But, take away everything I do and let me speak frankly as a person who just so happens to have HD in my family, how dare you throw what we've done back on our face. To be there for a person and a family who is new to the struggles of HD, to have late night phone calls, lunches, dinner dates, support groups and doctors appointments together and have it all be thrown back at us like we are nothing makes me think, as I've been telling my mom all night, one bad apple can ruin the bunch. Having one family make us feel like we are nothing discourages us from moving forward in hopes to help more New Mexican families, makes us feel what we are doing is not good enough, and that continuing on is not as worth it as we thought.

Not only do we have two PHD's at home who we have chosen to care for full-time because we have seen first hand the horrible conditions and treatments in nursing homes, and not only do we have bad days, days in which when at support group we cannot help but cry and whine and complain about our own circumstances, not only do we feel like the world is crashing around down on us, and not only do we feel like we are the only ones going through this... but we understand because we are not the only ones going through days like this, or feeling like this, we need to continue to be there to support others who are feeling this way too.

Don't disregard the help we've given you and to dozens of other families because you are having a hard time dealing with the stresses HD brings with it. We are here because we have seen HD first hand, from my grandfather, to my father and to my brother. When it comes to HD, my whole life has been dedicated to understanding what HD is from all angles and how to cope with it.

No, I may not be the best Peer Coordinator for the support group, that is why I bust my butt to fundraise so we can get a paid facilitator to do that job. No, I may not be the best advocate for my fellow New Mexican's with HD and their families, but unless other's step up I'm all you've got, and perhaps I am not the best Affiliate Chair, but honey there were none before me... I'm am doing the best I can with the little help from you and those like you I get, which is none. WE ARE DOING THE BEST WE CAN as caregivers, you are not in our shoes, you do not live with us, you do not come out to give us respite, one day you'll will know the struggles we face...

And this tid-bit is long over due, THINK YOU CAN DO BETTER, BE MY GUEST!

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

Help Team Mabry reach our goal!

My family and I are raising funds for our Team Hope Walk on May 10th in Albuquerque, NM. Please visit the link below for our FirstGiving page to donate. We are trying to raise $1,500.00 this year and greatly appreciate every penny!

Being a part of HDSA has been a life changing experience for myself and my family, and it could change your life too! By joining our team, sponsoring, or donating, you are partaking in something larger than you and I could ever imagine. My brother and father both are suffering from this devastating illness, and it is up to us to create the awareness necessary to find a treatment and cure for HD. Through our Team Hope Walk we hope to teach many new family members, friends, and colleagues about HD and help them learn to spread the word of HOPE. Please donate what you are able in order to help my family reach our goal of raising $1,500 for our event!

Team Mabry's FirstGiving Page

Time to stop and smell the roses...

I cannot believe it has nearly been a year since I last updated on my life with HD. Since my last post was about testing, and testing negative at that perhaps I should update my readers on what has happened since then. Since March of 13' I have done so many amazing things to help HDSA and the NYA (National Youth Alliance) spread awareness for HD. I have become the Affiliate President for New Mexico, I'm also on the board for the NYA and let me tell you it has been an awesome experience thus far. With my affiliate team we are planning several events to take place in NM this year, a Caring for the Caregiver's night, Education Day, Alive & Well viewing, Team Hope Walk and so much more. For NYA it seems to be a running pace, but I love a challenge. We've got the board back up and running, website constantly being updated and planning for the NYA Day and convention for youth's in June. Recently I've moved back home with my family and to add, so has my dad! If you do not remember he was living in a nursing home for the last five and a half years. I am now helping my mom with my dad and brother full-time on top of my job, and work with HDSA & NYA. It has been a struggle, but we are finally settling into a schedule and it's become a lot easier to deal with. As for what else is going on, it seems like there needs to be a vacation or at least a moment to be able to stop and smell the roses.