helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Quietstill

My friend went into Hospice

9 posts in this topic

Because this is a fraught topic, I thought I would share my thoughts.  My friend has PSP, a nasty fast, terrible relation to PD.  She's been at home, cared for by her DH, with some Aides.  She is in the end stages, bedridden, only able to minimally communicate for the past 6 months.  This past month, the progression has been noticable.  Her discomfort has gone up, couldn't eat anymore even when food was pureed.  I mentioned hospice to her DH a few months ago, gave him an informational booklet.  She had brought up several times she didn't want to live this way in the past.

 

They signed up, and she went to a home this week.  Her DH feels exactly like you'd expect; tortured, guilty, a failure as she was no longer at home.  And yet, and yet...  I drop in once a day, she's hydrated, her mouth is no longer dry and cracked.  It's quiet and well staffed,. and instead of the TV being her companion, people drop in.  They have a masseuse who goes from bed to bed, she's going to the jacuzzi twice a day (helps the painful dystonia).  No, she's not home, but she is physically comfortable at last, TG. 

 

That's all I have to say.

3 people like this

Share this post


Link to post
Share on other sites

Quiet, that is so sad to hear. I hope your friend there family and you can find peace. It is not easy to watch. The good news is your friend is getting help.

 

My friends father just passed from PSP. It is a fast moving version of PD, that is for sure.

My blessings to you and those around you. Keep strong

 

Adam

Share this post


Link to post
Share on other sites

What a wonderful friend you are! Hospice services can make these hard-hard times a bit easier. 

2 people like this

Share this post


Link to post
Share on other sites

I am glad she is getting the care she needs. 

 

For all of us, do realize Hospice today is for palliative care and not necessarily terminal care.

 

A friend has a Golden Retriever who is a therapy dog. Yes, they visit Hospice, elderly, and critical care patients.  I think that would be a fantastic calling as nothing better to reach down and feel a furry friend next to me at times. 

1 person likes this

Share this post


Link to post
Share on other sites

Quietstill, I'm so sorry about your friend!  I can only imagine how you feel.  You did the right thing to pass along hospice information.  It's a shame when families feel that they have 'failed' a loved one when they elect it.  Everyone's different but I'd feel better if it was my dad, knowing that he wasn't in pain.  I would want it for myself if I was in that person's shoes.  

 

Hopefully now at your visits you & your friend can just enjoy each other's company.

Share this post


Link to post
Share on other sites

Quietstill- I am sorry about your friend. I am glad to know that great care is being given. Hospice was a wonderful thing for my father-in-law for the last two months of his life, though he remained at home. After going through that with him, I don't know how we or he could have managed without hospice. 

Share this post


Link to post
Share on other sites

Quiet still....I believe angels visit through the mouths of strangers and especially friends. Kudos to you for listening to the spirit and having the wisdom to counsel your friend.

 

My DH's family essentially left my mother in law to me when she was dying. I thought she would be in hospice...terminal assistance. I called hospice coordinator to learn proper papers had not been authorized. It was an awful situation.

 

However, I was able to admit her to hospital over objections of her husband...and they provided relief until she passed. More often than not, an unassisted passing is not comfortable and leaves indelible memories. It is a myth that people pass quietly without medication..I have been through it twice.

 

I hope this encourages people to use the services of hospice organizations.

 

NN

Share this post


Link to post
Share on other sites

I've seen a housemate in an adult family home deteriorate, receive hospice services and finally pass away. Like me, she was a social worker. She had no visitors any longer. I remember how sad it was. Your friend's husband will, I hope, stop torturing himself. He did the very best he could. Thank you for sharing this story with us. It is important for each of us to make our wishes known well ahead of the time of need.

 

Dianne

Share this post


Link to post
Share on other sites

Glen Campbell recently went to assisted care for Alzheimer's . He wrote and recorded a song at the end of his career, entitled, " I won't remember you." He realized that he was deteriorating to the point of not knowing his family. I was shaken by the song...and felt it was callous.

 

As time passes, I realize it was his way of saying not to worry about what he was experiencing...because he is in another,world...and for his family to leave guilt, sorrow, and pain behind...for after all, he has.

 

His son recently re recorded it...which says to me, the family understands and the message was received.

 

NN

1 person likes this

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now