Well hello again, it has certainly been some time since my last post in April of 2015.
As usual, there have been many changes in my life. Some good, some bad...
Since last I wrote my father, Edwin Mabry, passed away after a 14 year battle with HD on June 6th, 2015. I have attended 2 conventions since then in June of 2015 and 2016. I have bought a house and felt recently like I was finally getting my life back together.
The passing of my father took a toll on us as a family. It was a long week leading up to his last breath, he stopped eating and refused when we offered which lead my family and I to make decisions that were not something I ever saw myself making. He is now buried in Santa Fe, NM where we visit him often at the Veterans Cemetery.
Bryan, my brother, continues to progress with his JHD. Still smoking and acting wild, but he had a good Christmas and at this point what more could we ask for? His symptoms are getting worse, more and more difficulty walking and talking, and continuous fights with my mom.
This blog has been in some serious need of attention, whoever may be reading this... I hope to return to sharing my story in some way, the story that has inevitably changed throughout the years, from the young girl who was at-risk who went through the testing process, and came out the other side. As a caregiver who moved home, as a fundraiser and a leader in the HD community, to now just another HD person trying to find a different path that is more suited for my life right now. HD continues to be a large part of me, but as I've learned there is more to me than HD... and I hope to share that with you here.
Tuesday, December 27, 2016
Wednesday, April 8, 2015
Let go, and be...
"Maybe you have to let go of who you were to become who you'll be."- Carrie Bradshaw
This is definitely an update post, as I haven't done much of anything in a while. Lately, there's been a lot going on in my life and the lives of those I care about.
As many of you know, I am a member of the NYA and in the last few months many of my friends have lost a parent to Huntington's disease... Even being so far from them all and not knowing their loved ones personally, I still feel an uneasiness, a sadness deep within my heart and soul. I feel very lost and afraid for my own family when it comes to HD. As the past four months have been the end of lifelong battles for so many, could my family be touched by this pain next? My dad has been extremely restless these last couple weeks, still eating but with more difficulty and we're having to get creative with shakes, and not nearly as "talkative" as he was. I look in his eyes and see much exhaustion, tears and fear. I too am afraid... Growing up in an HD family and having prepared myself the last few years for what is inevitable, I can't help but realize how scared I am to really lose my dad...
My brother, Bryan, has been living in a group home since October and has been doing very well there. I find myself always feeling bad about his situation. I do wish he were home and we could be closer, but he behavior is still erratic and unpredictable. We went to visit him for Easter at his caregiver's home, and she welcomed us with open arms. He was happy to see us and we were happy to get to spend time with him. Bryan has difficulty walking, talking and eating, but still able to do much on his own with supervision. Perhaps one day he will return home with us, but for now the arrangement we have is working much better than what we had before.
I had started working part time for a funeral home in the Fall, and in January I received another part time position working for a behavioral health and mental health counseling facility in the town where I live. I am ten minutes from home in case something were to happen and my position at the front desk uses of a lot of the skills I had learned from previous jobs, but also with HD. I have recently become a property owner, and hope in the next several months to have a new home of my own next to my family.
For the past several months I have been working hard on the NYA and Convention planning, but even as busy as it has kept me I feel a large void in my life... I fill my time with projects, and not people. I often wonder, no matter how much I love the NYA, if I've gotten in too deep? Maybe it is my survivor's guilt? Or perhaps my own desperate need for approval, but sometimes I feel like there is so much potential if only I were not a part of it, like I am too consumed. I also feel like I don't have much in the way of close friendships, everyone I know is merely an acquaintance. There is no deeper connection with anyone, no matter the battle we've faced "together".
I have felt very lost lately, too many deaths, too many changes, too much going on and also too much not happening. Shouldn't I feel something different? Where is the support for the person trying to help everyone else, where is the care for the caregiver, the overachiever, the negative for HD person that feels lost in a world consumed by HD?
This is definitely an update post, as I haven't done much of anything in a while. Lately, there's been a lot going on in my life and the lives of those I care about.
As many of you know, I am a member of the NYA and in the last few months many of my friends have lost a parent to Huntington's disease... Even being so far from them all and not knowing their loved ones personally, I still feel an uneasiness, a sadness deep within my heart and soul. I feel very lost and afraid for my own family when it comes to HD. As the past four months have been the end of lifelong battles for so many, could my family be touched by this pain next? My dad has been extremely restless these last couple weeks, still eating but with more difficulty and we're having to get creative with shakes, and not nearly as "talkative" as he was. I look in his eyes and see much exhaustion, tears and fear. I too am afraid... Growing up in an HD family and having prepared myself the last few years for what is inevitable, I can't help but realize how scared I am to really lose my dad...
My brother, Bryan, has been living in a group home since October and has been doing very well there. I find myself always feeling bad about his situation. I do wish he were home and we could be closer, but he behavior is still erratic and unpredictable. We went to visit him for Easter at his caregiver's home, and she welcomed us with open arms. He was happy to see us and we were happy to get to spend time with him. Bryan has difficulty walking, talking and eating, but still able to do much on his own with supervision. Perhaps one day he will return home with us, but for now the arrangement we have is working much better than what we had before.
I had started working part time for a funeral home in the Fall, and in January I received another part time position working for a behavioral health and mental health counseling facility in the town where I live. I am ten minutes from home in case something were to happen and my position at the front desk uses of a lot of the skills I had learned from previous jobs, but also with HD. I have recently become a property owner, and hope in the next several months to have a new home of my own next to my family.
For the past several months I have been working hard on the NYA and Convention planning, but even as busy as it has kept me I feel a large void in my life... I fill my time with projects, and not people. I often wonder, no matter how much I love the NYA, if I've gotten in too deep? Maybe it is my survivor's guilt? Or perhaps my own desperate need for approval, but sometimes I feel like there is so much potential if only I were not a part of it, like I am too consumed. I also feel like I don't have much in the way of close friendships, everyone I know is merely an acquaintance. There is no deeper connection with anyone, no matter the battle we've faced "together".
I have felt very lost lately, too many deaths, too many changes, too much going on and also too much not happening. Shouldn't I feel something different? Where is the support for the person trying to help everyone else, where is the care for the caregiver, the overachiever, the negative for HD person that feels lost in a world consumed by HD?
Saturday, October 4, 2014
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.
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.
Saturday, August 23, 2014
Patience is a virtue, or so they say...
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:
- 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."
- 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."
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...
Tuesday, August 12, 2014
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.
Monday, August 4, 2014
Don't throw stones if you live in a glass house.
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!
Tuesday, July 29, 2014
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?
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?
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