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HIPE VIRTUAL EXPERT PANEL ANSWERS QUESTION ABOUT NOT BEING ABLE TO VISIT LOVED ONE IN CARE FACILITY


Katrina Hamel: What can I say to my spouse who is in a longterm care facility as to why I can not visit him because of COVID-19. I can only FaceTime with him. Family has sent him cards, pictures, and we had a Facebook Portal sent in to the facility to use as Face Time.

It's been seven weeks of quarantine. Sometimes I think he understands somewhat and yet he is declining with depression and acts like he is giving up. Everyday I tell him I love him and miss him. In trying to help him explain a little further of the situation of why I cannot visit him, I tell him the virus is very contagious and people cannot go to work. Schools and restaurants are closed. I get no response from him.

Most of the time he will not even look at the camera to see me now. Let me say though, the first couple of weeks of quarantine, he was talking some. I could get a response and usually a wink or a smile, but [00:01:00] not now.

It has gone on now for so long. I'm afraid that he will never be back to where he was. Even though he did not catch the virus, the virus caught him in a different way.

As clinicians in HD and understanding the disease very well. I am asking you, what can I say to help?

Terry Tempkin: First of all, I'm going to say my heart goes out to families. Not only this family, but families that have a loved one, in a facility. I know that that presents special challenges. The red flag for me and what you read was that in the beginning it seemed like he was hanging in, but this person has noticed a decline. I think probably the most important thing right now in this scenario is have his physician, whoever oversees his care , screen him for either increasing depression or new onset depression. Because I think under any circumstance that's a risk.

It's a risk for all of us who were in this. But you know, knowing [00:02:00] that, incidences of depression is high in folks with Huntington's. So if that person has existing depression, he ought to be rescreened. And is there something they can do to help with medication adjustment or starting medications to help this person cope.

This person asking the question also kind of highlighted everything that I would recommend. Working with the staff to try to reach that person using FaceTime, saying, I love you letting that person know they're not abandoned. I'm here for you. I'm here. Present as much as I can be every day.

You guys all know, and having dealt in our community and having dealt with people with Huntington's, you can't always say, okay, this is it. And they understand and comprehend it and everything's okay. That's kind of an unreal expectation in many cases. But I think this person is doing an extraordinary job about being present for this person because that's what we're trying to talk about.

You can't physically be present, but she looks like she's emotional and trying to be [00:03:00] present, and my hat is off to everything that she's doing. The only other thing I'd add is contacting them to see if there's some ongoing depression.

Dr. Sam Frank: I completely agree, Terry. This is not an easy situation for any of us across the country in terms of Corona virus . It's a serious medical one too. Not only am I at Beth Israel Deaconess Medical Center in the outpatient setting, but I actually go to a chronic care hospital.

A couple of times a month and there are about 50 patients with advanced Huntington's disease. There are, about a third of the hospital that got coronavirus . It really is a very serious safety issue. And, and I think people in a longterm care setting may not recognize that right now.

The only other thing that I would add to Terry's comments are that many times in longterm care settings, patients have a particular nurse or aide or manager or someone that they identify with and really connect with and like on some level. The family members might want to channel some of that good energy through that person [00:04:00] at the longterm care center as more of a hands on personal touch since we can't get in there ourselves.

Lisa Mooney: I think just being there, like Terry said, emotionally for your family members is the best you can do. I think yes. If the person is declining and getting depressed and seems to be declining emotionally, definitely getting them an assessment by their provider, is a good thing to do.

Katie Jackson: I just want to say it is not your fault. Do not feel guilt. Because it's not your fault that the pandemic happened. It is not your fault you can't visit your loved one. So please do not beat yourself up as a caregiver because that's what we do as caregivers.

Katrina Hamel: You are doing what's best for him. You are showing him love by not being there, by not showing up. Even though they probably wouldn't let you in. Your still protecting him by not coming . I think that you're doing what's showing the most amount of love in my opinion.

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