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Visitation

A MyParkinsonsTeam Member asked a question 💭
Albany, NY

My husband just went on hospice he is still aware and he can still use the bathroom and spend a short amount of time in the kitchen. He is very confused and can’t carry on a conversation . People want to visit he really doesn’t want that. They say they really need to see him I understand how they feel but I can tell he hates it. He said the other day. did you come for a last look. I would just as soon have visitors doesn’t matter on way or the other. Any suggestions on how to handle this… read more

June 25
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Reactions
A MyParkinsonsTeam Member

My husband likes really short visits.He loves the cards,does not talk on the phone. Stay true to your husbands wishes. You are doing the best.🤗🥰

June 25
A MyParkinsonsTeam Member

Most of those people just want a chance to say goodbye. Ask your husband, in his more lucid moments, whether he would like to say goodbye to any of them before it's too late. My husband's brother was put on hospice a couple of months ago. We went to say goodbye and to let him know that we loved him. I think he was glad to see us. I know it meant a lot to my husband to get the chance.

June 25
A MyParkinsonsTeam Member

Thank you hospice said it isn’t that unusual it is called withdrawal. Just doing the best I can . Thanks all again

June 26
MyParkinsonsTeam

What a tender and difficult situation to navigate. Your husband's comfort and dignity should come first, and it's clear you already know that in your heart.

His comment — "did you come for a last look" — says everything. He is aware enough to feel the weight of those visits, and that matters deeply.

Here are some gentle Show Full Answer

What a tender and difficult situation to navigate. Your husband's comfort and dignity should come first, and it's clear you already know that in your heart.

His comment — "did you come for a last look" — says everything. He is aware enough to feel the weight of those visits, and that matters deeply.

Here are some gentle ways to handle this:

- You are his advocate. It's completely okay to limit or decline visits on his behalf. A simple "He's resting and needs quiet time" is enough.
- Short, calm visits only — if any. No pressure to talk, no emotional outbursts from visitors.
- Redirect well-meaning people to other ways they can show love, like sending a card, dropping off food for *you*, or simply calling to check on *you*.
- Protect his sense of control. Letting him decide day-by-day if he wants company can help him feel respected. Also, don't forget — *you* matter too in all of this. Caregiving at this stage is exhausting and emotional. Leaning on your hospice team for guidance on managing visitors is completely appropriate; that's exactly what they're there for.

You're doing a beautiful job protecting him. 💙

June 25

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