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Decision to start Hospice for my grandmother

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Life is a big bowl of change, happiness and sadness. We made the decision to start hospice care for my grandmother this past weekend (it will start today) at the Nursing Home where both she and my grandfather are now living. It’s kind of a weird thing because when we admitted her to the Nursing Home a couple months ago, we ended up meeting with the Hospice Coordinator. We met with them early on as she qualified for hospice then, but my grandmother opted to try radiation more for palliative care/pain management vs immediate hospice care. I always thought of Hospice as you are on deaths door, can’t move or talk and ready to cross over to the other side. That’s not the case. 

Hospice Care for my Grandmother

My brother, my niece and my grandparents

My entire life, whenever I hear the word Hospice, I think death. When they suggested that we consider Hospice late last week, I thought, OMG, is she going to die tomorrow? Is this the end? Oh no. 

One thing that I have learned though, is that Hospice isn’t for someone on deaths door. I mean, yes, she is going to die (I have come to terms with that) but it doesn’t mean it’s tomorrow. The Hospice Coordinator, doctors and nurses explained that they are trying to change that common notion of Hospice and explained that my grandmother has a terminal illness, cancer. She could technically be on hospice for years (although I doubt she will make it years). The qualifying factor is a terminal illness that isn’t reversed with medical treatment.

Hospice Care for my Grandmother

My son and my gram

Hospice Care will be in addition to the medical staff and aids that she has now at the Nursing Home and we all know that Nursing Homes, even the great ones, are under staffed. So for my grandmother, the fact that she will have a dedicated nurse and a volunteer team that will visit with her weekly is a good thing. It’s just another set of “eyes” on her. The Hospice Nurse can recommend pain medication as well as anything else for my grandmother and it will be reviewed and approved asap.  I have to say though, the facility that my grandparents are at (Salmon Health & Retirement in Massachusetts), the staff is amazing (knock on wood). They literally call my dad or I if they are giving her any new/different pill immediately. They call if her breathing has changed. They call if she seems upset. They call if they are drawing blood. They are amazing! They do the same for my grandfather. 

The decision to start Hospice for my grandmother

My brother, gram and me a few years ago at Thanksgiving. He hates her hair long and I know if she saw this picture, she would say, “eeewwww my hair is so long.” My grandfather probably was insisting she grow it out -ha. He likes long hair. 

My grandmother has gained a pretty big amount of weight since being admitted a couple months ago and she is retaining fluid.  She looks like she is going to blow up. She had kidney cancer 10 years ago and had a kidney removed so she has that working against her. They have her on a very high dose of pee pills (that’s what I call them – they are water pills.) to help her pee. She hates the water pills as it’s not a fun thing peeing 24/7 and wearing a diaper. It’s awful and I hate that she is suffering. They also increased her depression medication as she is pretty down in the dumps. 

grandparents + food + winter

She had a great weekend though given the circumstances. My husband and I brought her power recliner from home yesterday and set it up in her room so she can now keep her legs elevated. We have been trying to convince her that she needed the recliner from day one but she refused to use it. I know what she was thinking (same as what my grandfather thinks), she doesn’t want stuff from home there because she is hoping to “come” home again to live. The recliner being delivered yesterday was basically a mandatory order from the Nursing Director (thank you Ashley for telling her it was time to have it delivered) so my gram reluctantly agreed. 

One thing that is always a constant, is change. So the Hospice Care starts a new phase of this thing we call life. I still wish she would just close her eyes one night, go to sleep and pass peacefully. This suffering crap is not what I would wish on anyone. I know it’s sad to say, I wish she would pass but her quality of life isn’t good. God has a different plan though. Catch up on my grandparents on our Nursing Home Diaries or Dementia Diaries pages. PS. if you didn’t see the epic living room makeover at my stepdaughter’s house, check it out here

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15 Comments

  1. My brother was a director of hospice here in Dallas. I’ve learned they are there to help patients live peacefully and painfree and comfortably for as long as they can. They are such a help to the families that are also suffering with the illness. I agree with you, going to sleep and not waking up is the best wish
    Prayers for your family

  2. Just to let you know my mother had hospice care for 2 years. The services were amazing. They provided any meds immediately, furnished her with special chair, bed, toileting mechanism. Wheelchair walker etc. I live out of state when she came to stay with me for a month they provided all of this under a traveling contract. In her last days she did not have to be moved to a hospital because they could manage her pain in the facility she was living in. It was all paid for under hospice and the level of care was amazing. Best of luck

  3. My daughter in law is a hospice nurse. They take such good care of their patients and will be able to help you in so many ways. Continued prayers for your family

  4. While I can’t say I’m happy she is on Hospice now, like you, I’m glad she will be getting the additional care. Hospice is a wonderful service when it’s needed. I’ve got experience with it. I hope the chair brings her comfort level up, and that they can effectively manage her pain. Sending hugs to her and your family Jess.

  5. My heart breaks for all of you. I understand your sentiment for sure. Just a thought … I believe vitamin E is a natural diuretic … possibly less side effects than the water pill?

  6. Lin (Linda) Mossgrove says:

    Hospice was amazing for me with my Dad–he had Alzheimer, They cared for him and me–his caregiver for 18 months, The love and support we both received eased my heart–his passing still hurt–but he was surrounded by family and friends who are family! Hopsice has changed drastically over the past 20 years–from care of mostly cancer and dying patients to exactly what you said—care and living the rest of your life with dignity and as pain free as possible,
    My prayers continue for you and your family–may God give you courage, strength and comfort,
    Gigantic cyber hugs—Lin

  7. I’m sorry your grandma had to go on hospice care, but your explanation of it, sounds like it will help get her the care she needs. I hope her depression medication helps and that the chair brings her comfort and a feeling of home where she’s at.

  8. Juanita in OH says:

    Sometime the rollercoaster that you and your family are on is so volatile you need a hard hat! I continually pray for peace and comfort for all of you. It is funny that you mention your gram falling asleep, I just told my husband that if I fell asleep and didn’t wake up it would be fine with me…no more pain. After 17 years of this, day in and day out, permanent sleep would be a welcomed friend to me. I really understand what you are saying about your gram. All that you are going through is extremely frustrating and not good physically. Continued prayers and God bless you all. Cyber Hugs and TFS.

  9. Continuing to pray for you all. Everyone who has seen a family member suffer understands the wish that they could just pass in their sleep. May God be with you and give you peace.

  10. We too had such an amazingly wonderful experience with hospice for my father in law. It’s a sobering decision but in the long run such a good decision. I’m praying for your family. Praying for God’s peace to be felt during these days and that He would be very near to each one of you.

  11. This can be hard, because of the love we have for our love one, but sometimes we have to do what’s best even if it do hurt. We had hard decisions to make similar to this. I hope it all working out for you and your family.

  12. Your Grandma is always smiling ! So special !