I went to Cardinal Cooke this afternoon in NYC to visit KB who worked in my dept.
I went alone without any of my other staff so I could see what things were like.
I am so very glad I went and K was so much better than I had feared. She was in a day room with about 20 other residents. Her mind is sharp. She immediately knew who I was and asked questions about the rest of the staff.
I had to listen hard to understand her; but her movements had been worse the last time she visited us. I think she is on a med which controls that.
My greatest fears were that she could not talk or recognize me and be bedridden; however, this is not the case. My New Years resolution is to visit frequently, once a month . Also I was gratified to talk to the others around the table. I could tell they liked to get visitors.
Thanks to all for the encouragement and advice!

I am so happy that you found her in good condition - I am sure the visit was very meaningful for her (and probably the others too). Wonderful to take a leap into the unknown and have such a positive result. You are a good friend.

I am so glad that the visit went well. Were the other patients people with HD also?

Yes, they have a 48 bed Huntington floor. Different wings with day rooms. I would like to get to know some of the other patients there too when I go to visit.

Wow, with that many people there with HD, do they have any type of literature or a guide to provide to nursing homes who have residents with HD? It seems as though they'd have a million suggestions for best care practices.

I was waiting to see how your visit went! That is great. I know that old and/or sick folks look like they are just old and sick when you just see them in a film or just briefly as a group, but the truth is each individual is full of his or her personality, life experiences, and needs for contact and care. That is so neat you are going to go visit regularly.

Alice, you are so right. KB is in her early fifties and there was a variety of ages there. As far as suggestions for nursing home care at Cardinal Cooke, I am going to do some research and will forward any web sites if I find the information.
What I noticed was the life in the eyes of the patients sitting near Krista at the table.
They had a long table and there was a box with paint brushes,crafts on it plus a big tv in the room. They also take them on field trips, etc.
I am going to get in touch with the volunteer person to see about possibilities of doing something more.
My time is limited though as I live in Connecticut and have a long commute so I would need to do something on my lunch hour. Cardinal Cooke is at .106 St and I work at53rd Street so it takes awhile to get up there.
But from their day room, it overlooks the end of Central Park- a lake and trees.

Anne

I didn't realize that they had a 48 bed HD unit. That is great.

Paula

There are a few homes (mostly in the northeast with similar numbers). Laurel Lake in Lee, Massachusetts (where my daughter lives) and Lowell Healthcare in Lowell Mass. both have programs started by Jim Pollard. Laurel Lake has about 50 HD patients in their program. Like Cardinal Cooke, their program has patients of all ages who stay busy with specialized programs and outings. I believe that Eric's wife lives in a home in Indiana with about 20 HD patients. If there were more of these homes I think that folks would be less apprehensive when it comes time to place a patient. In my daughter's case, she would rather live nowhere else.

Val you did well . Keep up your good works . May I suggest , keep your visits simple , don't feel like you have to entertain the person you are visiting . But having an interesting picture or small story too tell , will help you if there are long silent pauses .
Do your best and be glad your the type of person who did and does want to visit . all my best . db

This is a link to a 12 page article on end of life care at Cardinal Cooke, for those interested in Nursing Home standards. It is a long link but if you copy and paste in your web browser, it should work.

[findarticles.com]

If not then a google search for "Huntington's Disease a caring approach to end of life" will work. Half way down you have to scroll past some advertising links. Good advice for nursing homes.

However you all are the experts and have read it all and lived it all. I am only on the periphey of this issue as a third party removed. I Manage a law library though and cannot help myself to do research!

I was kind of lucky in a way, we had two doctors in the family. So when people became elderly the doctors would pretty much say you can't do for this person at home what really should be done. It wasn't a failing of family or any such thing. Just sort of a medical fact. It's time for a nursing home for this person. So I grew up going to nursing homes every single Sunday. Now I didn't really like the routine... but nursing homes really weren't something that bothered me then, and I sort of enjoy them now.

I haven't seen Laurel Lakes or Cardinal Cooke. They sound really nice. "Nicer' than what is done here in fact, but maybe not. I can't compare. But I do think the one thing they probably have in common with each other is a certain tolerance level for the unexpected. That's sort of the stepping stone of success for the whole place. Yes there are some specific training methods that help, but it's all a means to an end which says, care for HD isn't really that hard, just different. You would think that if you cared for HD at home that the effort there, times 20 or 50, would be impossible. But it's amazingly manageable. The two people at the NH that bug me the most and are just a PITA are not HD residents. Every single day they do something that just makes me want to pull my hair out. I only met one HD resident who stood out as really hard to find like likable or feel neutral about. Otherwise, other than an episode here and there, people with HD are not too demanding. They have "their thing" and if you supply that thing .. a certain TV channel ... a certain food, they are really happy. No one person there is consistently a problem. Each may have their bad day or week. You figure it out and that's behind you.

I know people would love "instant" Laurel Lakes to pop up. But I think the baby step method to getting homes that are HD friendly is a better way to go. Maybe one day this place here will be a Laurel Lakes. 5 years ago Teresa was the only HD resident. They have grown into HD specialization. And even with "best practices' published... it's very much hands on with a learning curve.

I am sure there is still a way marketing the idea of HD wings to the right places. Once it's done and done right, it's pretty irresistible to expand by a room here and there. The nursing home here was about shut down only being half full... now there is no empty space. And on top of that, when the economy rebounds, this company is thinking of starting another place like this one based on HD. It's a matter of identifying and targeting the message in the right places. Offering COE support and social worker in-service time to them all works very well in the transition. It's been done and I don't see why it can't be done again.

Val... hope you enjoy your time at the NH. I find no matter what ya do as volunteer, a nursing home is a home as far as you and I are concerned... so just make yourself at home and then what ya do from there sort of comes to you.

Ray is the first and only resident with HD at the nursing home he lives in. There was definitely a learning curve for the staff in trying to meet the different needs of a person with HD. They're really great in brainstorming and coming up with unique ways to help Ray, but at times we're all kind of stumped! Sometimes I wish they had a little more experience with HD and understanding of the disease, but I guess Ray is their learning experience, and I guess we're learning together!!