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 Ideas on how to support a family- patient has Parkinsons

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Anonymous Member posted 05-21-2026 12:53 PM
This message was posted by a user wishing to remain anonymous

Recently admitted a 69 yr old with Parkinson’s to hospice care. Pt/fam have lived with the diseases for many years. He recently was admitted to the only SNF in our little town due to wife not being able to care for him on her own at home. The SNF staff do the best they can but sometimes it’s not the best care. It is difficult for spouse when she visits him and his needs aren’t met; wife feels guilty for placing him; they have young adult children who visit but live hours away are struggling; one of the children is getting married in a month; pt won’t likely be able to go to the wedding and family doesn’t know if they want him to go either; pain/behavior is somewhat managed.

I have spoken with wife around feelings of lack of control and helplessness. Wife is able to verbalize anger that they are being robbed of their retirement years together; it is hard to assist wife with what to anticipate as far as the disease process as people don’t die from Parkinsons but from symptoms related ie falls, pneumonia. Of course, we never know truly how long someone has to live but can give estimates based on symptoms we see; however PD is a whole different beast.

Feeling inadequate on how to help/support this family in their hospice journey. Thoughts?  

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Anonymous Member
This message was posted by a user wishing to remain anonymous

A few suggestions if I were in your shoes...

  1. Is she connected to the Parkinson's Foundation for support groups and resources? Broadening her circle of support especially with other family care partners who are living through similar feelings/experiences may help normalize where she and her spouse are in their PD journey.
  2. What are the psychosocial frequencies for her? If she's not talking with the MSW twice monthly or more, consider increasing the frequency. Consider same for spiritual care if within their POC. 
  3. Is he a veteran? If so, is the PD service-connected? The VA's programs for family caregiver support offer counseling or therapy to the caregiver depending on veteran's situation. 
Maribeth Kearney's profile image
Maribeth Kearney

This is such a difficult situation, and unfortunately one that is very familiar to many of us in hospice work — and to me personally as well.

It truly sounds like you are doing a wonderful job supporting both the patient and his wife through something incredibly painful. In many ways, they are both grieving the loss of the retirement years they had hoped to share together.

One suggestion regarding their child’s wedding would be to consider having a caregiver attend the wedding with him. That way, the caregiver can focus on his personal needs during the celebration, allowing the family to be more present and enjoy the occasion without carrying the constant worry of caregiving responsibilities.

Another option, which I personally did for my father who also had Parkinson’s Disease and could not attend a family wedding, was to create a celebration at home with him. We made the day feel special with wedding-style foods, hors d’oeuvres, a beautiful dinner, and dessert. My family FaceTimed throughout the event, and I shared the television screen so he could watch, interact, and feel included in the joy of the day. It was not the same as being there in person, but it helped him feel connected and remembered.

Our hospice team has also used volunteers to help create meaningful moments for patients who could not attend important events. We have celebrated weddings, graduations, and family milestones alongside patients while their loved ones attended in person. Those gestures have been deeply meaningful for families.

Please do not feel discouraged. You and your team are doing everything you can to support this family with compassion and creativity. It is important to acknowledge how hard this is, while also helping the family understand that they still need permission to continue living, celebrating, and experiencing joy. Hospice can help the patient remain connected to those moments in different ways, with the support of the entire team.