Hey All,

It's been awhile since i've been on here but I'm finding myself needing some advice right now. My Dad was diagnosed with HD in April of last year and I have not yet been tested. My dad is doing fairly good he's slowly seeing more and more things that scare him and prove that HD is indeed part of his life.

Let me explain my current situation. I am the Director of HR of a long term care/rehab facility. And I know, alot of you hate long term care facilities but I truly believe in the great care we give our residents and feel as a whole we do an all around GREAT job at caring for the people that have made this their home. With that, we recently had an HD patient come into the Rehab facility to recover from a fall and has now transitioned into our long term care. My question is, do I try and reach out to him as another person that understands HD? Or do I go about it like I don't know his dx? Truth is, I knew he had it before I read his chart--all the sypmtoms are there. He's always lying in his room alone watching tv or on his computer, and I'm just not sure how to approach it.

I'm not going to lie I went home in tears when I realized his dx, because it's reality hitting me all over again. But, I am trying to look at this as a learning perspective and to prepare myself for what is to come for my Dad and possibly myself and siblings. What do you guys think I should do?

Thanks again for the help, it's appreciated!

Huh? Why do you want to reach out to him with some kind of "special" bond? You've read on his chart he has hd, it's no secret, so why do you want to treat it like some kind of special secret to bond with him over? I don't get it. The professionals that work in nursing homes are supposed to know what illness each resident has, and treat them accordingly. I have hd, and i find your question a little condescending and selfish, because you said you want to have this bond so you can understand what things will happen to your dad, if i understand you correctly. Sorry, but can't the fact that he has hd be treated like any other disease? By that i don't mean treated the same. I mean, each person in there has something wrong. You SHOULD be wanting to know as much as possible, and have as much understanding as possible, about each and every person in there! I would be so mad and insulted if someone wanted to treat me like their special case. Having said that, no, DON'T treat his disease like a secret, that's even worse. It's right in his chart. Talk to him about his disease when appropriate, just like you do with any other patient, but definitely not so you can have a bonding experience.



Edited 1 time(s). Last edit at 01/23/2013 03:42PM by Barb.

Barb,

I find your response to be rather attacking. Maybe I worded my question/concern wrong or maybe you read it wrong. Either way I thought this forum was for support and a shoulder not for attacking as you did Barb.

I ask because like being on this forum sometimes it's nice to talk to someone that knows about the disease. Let's be honest CNA's RN's and the doctors that work here know very little about the disease and they certainly don't realize what this patient has gone through. By no means was I asking if I should give him special treatment I spend time with all the residents here on a daily basis. What I am saying is, by informing him that I do know what his disease is and that if he wants to talk about it, I would be glad to listen.

I believe all people show up in our lives for a reason, and maybe this resident showed up for me to learn more.

Do you not know how to listen? This is someone with hd telling you how this comes across to me. Do you not want to know how this comes across?
hmm, so now, you want to be able to let him know that you know about hd. Wouldn't it be better to be able to say, to each and every resident there, whatever their disease is, we ALL know about your disease, not just one special worker knows about it. You are making this about you. That is not the proper thing to do. The proper thing to do would be this, if you feel your co-workers do not know enough about hd, then arrange for an hd social worker to come in and give all the workers an educational presentation.
You asked for opinions, sorry you don't like my opinion. If you don't want an opinion, don't ask. You weren't asking for emotional support because you are devastated at seeing someone with hd, you were asking for an opinion, not support, so don't say i wasn't supportive. By wanting to treat him special, it becomes condescending, and more about you, than him, and that IS my opinion.



Edited 1 time(s). Last edit at 01/23/2013 04:22PM by Barb.

ok. so this is a different situation, but Im going to offer a counterpoint.

When I found out I was at risk, I told a few people, and an aquaintance came forward and let me know they had a genetic disease also (they had tested and received a gene positive result). Talking about it has been so helpful for me, and also for them. I was one of the only people who understood what he was going through, and his strength bolstered me tremendously.

On the other hand, I can see what Barb is saying, in a way, that you (we all) have to be careful of singling out HD+ people and treating that situation as if with pity or undeserved condescension. I think its possible to approach this sensitively, privately, and from a place of care, and not of selfishness. But its all in the approach, isnt it.

I think if i were in your shoes, I would benefit from talking to this gentleman, but depending on what sort of person he is, he may or may not want to deal with, well, me.

best of luck to you either way, you seem like a caring and sensitive person, and im so glad to hear that there are thoughtful people in those positions at nursing homes.

dont stop posting here.

Barb, I am going to disregard your rude comments. We are all here for the same reason, to get clarity and support. There are positive ways of expressing things bu you are plain old rude. For being fairly new to this forum and HD you are not making me feel welcome or supported at this forum and I do not believe that is supposed to be the feeling I get on here. Opinions and thoughts can be expressed in a much nicer way. Of course I wish I could relate to every resident here but I can't, but I could to him that is all I am saying.

Kat, you have found a good place. I am not a health professional however my wife and a number of friends are. I sence this is compassion for a person with a disease you know too much about yet not enough. Perhaps you hope you can have a better understanding and the patient feel more comfortable; that is my interpretation. I am like you, I want to know not from a position of pity, seeing the suffering of the future but to understand a horrible disease progression that not only I face but my family faces. Hopefully that knowledge will help me make decisions in the future and help others with the disease in some small way.

In your profession I'm not sure how or if I would approach the person without approval from higher up the chain. You are exactly right about the lack of knowledge about HD. Just had a discussion with a retired RN today whose husband is a retired surgeon from Texas. She understood HD. Many areas are not large enough for an educated HD community of professionals. My primary Dr. has been honest. Many have not seen or only seen one or two patients since beginning medical school.

I remember my Mother in a Nursing Home several years ago and the RNA's and Nurses had their "favorites" and that is not that they did not take a professional approach, they could relate better to some and vice versa. By no means do I mean he would be favored. Simply asking for an opinion as you have, in the way you have shows me you want to do the right thing.

Sorry this is in your family. Chin up.

Compassion is a virtue.

Mike

Alright. We do all come here from different backgrounds and perspectives. I'm sorry for how intentions get to be misinterpreted sometimes. Katie and Barb, I'm pretty sure neither WANTS to offend, but somehow that has happened. Please still feel welcomed and approach the forum with an open mind.

Katie, I understand where you are coming from, being in healthcare myself. Barb, the medical chart is only accessible to his care providers, doctors, nurses, therapists, social workers etc. Katie is not in the "direct provider" position at her facility. Even though we know that staff divulge info about incoming admissions, by rights and HIPPA guidelines, Katie would not have open access to this man's chart.

Katie, I would imagine any new resident would welcome a friendly face. If you would like to visit and form friendships with any of your residents, you are able to do so, but approach them and their family as if you know nothing from the chart until they share that information with you. You can share whatever information you wish. He or his family may welcome having an understanding person on staff with some insight.

It will be wonderful for your staff, if you want to reveal your family history or experience, to have some insight of caregiving challenges. If you prefer to keep your own family history and risk private, as is your right, then maybe you can aid this man's transition by asking a volunteer from the local HDSA to provide an inservice.

There are many ways you can make the experience for any of your residents better, and I'd encourage you to do so.

Take care,
Patty

What Barb had to say was quite harsh but I respect her right to voice her opinion. Just as the person with road rage that flips you off when you make an error in driving, you allow them their anger, and keep moving on your merry way.
As a highly social person, I find myself constantly talking to strangers and always seem to find something in common with them or their situation, like shared hometown, similar interests, favorite movie. I don't hesitate to share with others the fact that my husband has HD, when they are also in a similar situation, be it HD, ALS, MS, Parkinsons, etc... I learn a lot from them and their loved ones, making me feel less alone and more connected.
I find no harm in developing a friendship with this person in your facility. Regardless of your motivation, I think it would benefit him to have someone who understands his situation and I bet his family would be relieved that there is someone on site that could be an advocate for him if needed. There's no way that you or anyone there could treat each patient exactly the same. Years ago I volunteered in a NH and I'm not ashamed to say that I did have a few residents that were my favorites and I spent extra time with them because they were either without family close by, or just such a hoot to hang out with.
So I say, so what if you are motiviated by your need to fully understand this disease and it's progression, in the end, the relationship you develop will most likely benefit the patient and make his stay there more bearable.
Amen, and God Bless You

Thank you to everyone that provided me some constructive feedback, it is greatly appreciated.

Often times, I sit down and have meals with residents here just to hear their stories, so I think that is how I will start my friendship with this particular resident. Alot of people in long term care facilities just want someone to listen to them, and when you give them that ear they'll tell you way more than even their family knows sometimes--those are the things that I cherish about my job.

Patty, you are correct I do not have access to his chart and nor did I get any information on him. I figured out his diagnosis by simply looking at him then later in the day when we were going doing our medication review in a QA meeting it was stated that we had one resident on a particular medicine for Huntington's, so that confirmed it for me.

I am a very compassionate person and what alot of people don't realize about working in these nursing homes is that we often times become the family to our residents. We are the people that care for them and love them and we work very hard to make this their home, I can't say all NH's are like this but here this is what we do.

I try to find the positive in things and I do think this particular person came into my life for a reason, and once I figure that reason out I'll be sure to share it with everyone.

I did not mean to offend anyone and apologize if I did offend anyone. I really do appreciate and value opinions on here and I agree that we are all allowed to share how we feel and people don't always have to agree.

I just wanted to share that this afternoon I spent nearly two hours talking with the resident and it was great! He told me all about his family, career, Huntington's, his hobbies, where he's traveled and where he still wants to go. Truly made my day to sit and talk to him for awhile today. He's a very happy guy for being in such a tough place, we laughed alot and he kept calling himself lucky I think that was in regards to HD. I am really looking forward to getting to know him more and maybe one day i'll share with him my knowledge of HD, or maybe not--we'll see.

Thank you again for helping me with clarity!

Katie, i still favour what i said, but i could have said it in a nicer way We probably both read each other wrong, and that happens

I am glad you decided to share. I think that there is so much ignorance about this disease within nursing home staff, physicians and neurologist that to have a person in one of those capacities know what Huntington's is and to have a personal struggle with it goes a long way. I once had a hospice Rn tell me that her family had HD; she was not caring for any of my relatives but was an advisor to me in a hospice class I took. The impression I got was that it was some remote part of her family that she never met, didn't have a connection to, lived far away or could not care less about. That was one experience where the sharing didn't work because it seemed that the woman had no understanding or compassion- I had a hard time trying to figure out which. In the city where I live there is one neurologist who refused to treat my mother because of her condition of advanced stage HD. There are no other neurologists in our area and medicaid only pays for doctors in the service area of our county. The nursing home staff have to be able to get medical orders from their physician who is their medical director. He is like a medical director in absentia because there is a Family Nurse Practitioner who works underneath of him. I was mortified that my mother in this condition has only a Family Nurse Practitioner. I warmed up to her when I saw the effort she went to stay up to date on the research for HD and trying different medications to resolve her symptoms, but when she told me that her family suffered from HD is the moment I felt at peace that my mother's health care was in her hands and over the course of the last few years I'd have to say that as a FNP she is far more knowledgeable and compassionate than either the MD or the neurologist. And as for Barb's post, I have learned from having a relative in a nursing facility that diagnosis information is protected from most nursing home staff's knowledge, what they need to know is how to care for the individual, not what disease they have (not my opinion but this is per the nursing home where my parent lives... I do inform the CNA's of what my mom's condition is and suggested that they have a training on the subject). Also, HD families can typically spot other HD families. My grandmother spotted another resident and conversed with him about HD. She did ask if that was his diagnosis as she noticed his behaviors; he confirmed the diagnosis and shared his story, which formed a bond between two families suffering the same disease. It's called PEER SUPPORT.

All is well that ends well. Sounds like everything worked out here.

I personaly don't hide the fact I have HD and if someone wants to inquire talke etc I freely do so. I would feel better in his shoes as well.

Mike