Only advocate and caregiver for grandma

abrosier

I am new here and posting for the first time. I just returned home from my weekly visit with my 89 y/o grandma at a skilled nursing longterm care facility. She has been there now for 4 years and I have been trying unsuccessfully to move her closer to me for the past 2 years. She is in the late stages,rarely speaks,wheelchair bound and for the past year smiles briefly when I say my name.I enjoy watering her plants,playing her favorite music and feeding her, but I fear she will aspirate any day now and Im at a loss for how to best advocate for her as most of my suggestions are not taken seriousely by the care mgmt team. Can I request a Hospice evaluation at any time or do I need a doctor order?

JeriLynn66

You certainly can request a Hospice evaluation without a physician order.

towhee

Welcome to the forum. Yes, you can initiate a request for hospice, but since she is in a nursing home that request might have to be to her doctor, not to the hospice agency directly, at least that was how it was explained to me. I am sorry that the care team does not seem to be responsive to you, are you the healthcare POA? May I inquire as to the issues you seem to be disagreeing on?

2parents/brain change

Hi I am 70 years old and would be so grateful for a grandchild like you! Ask for Hospice. Keeping asking if not Hospice, Palliative care. If there is a social worker at the home, contact the social worker. If not, make an appointment with the director of the nursing home.

Take care and hugs to you!

abrosier

https://alzconnected.org/discussion/comment/196042#Comment_196042

Thank you and yes I am the healthcare POA. The nursing home took away her floor mattress in her bedroom and she recently rolled out of bed (fortunately no major injuries). It took me three days to have the mattress returned after calling for repeatedly requesting it be returned. Someone made a decision that since she had not fallen in a few months they would take the mattress out. SMH.The staff failed to tell me that she has lost weight in the past few weeks. She is in pain no doubt either from swallowing difficulties or swollen lymph nodes or teeth issues.I wanted her meals pureed instead of mechanical soft. Im trying so hard to be patient but some of the decisions made in the past year since a new administrator took over have been absolute maddening. Fortunately I was able to get a hold of the social worker on the first try and he connected me with a Hospice RN the same day. Then I cried tears of joy when she was approved for hospice Saturday while I was visiting and the RN immediately ordered pureed food and she met with a chaplain, social worker, volunteer Aide and RN on Monday and Tuesday. This has been tough since they predict that she only has a few month...but I'm relieved that she is now finally getting the care she deserves. THANK YOU SO MUCH!!!!!!

fmb

I am so glad that your grandma is getting the care she needs through hospice. My 92 yo husband is in AL with ALZ (Stage 6) and other co-morbidities. He was enrolled in hospice when he moved in back in November. They have been instrumental in getting the care he needs and work well with the facility management and staff. They keep me informed of his changing condition and involve me in care decisions. They are truly a blessing to both him and me.

abrosier

https://alzconnected.org/discussion/comment/196110#Comment_196110

Thank you. I appreciate your kindness. It has been a lengthy journey adn I truly believe I have sone everything in my power to get her the best care and advocacy. I found out recently that the county I live in gives preferential priority to their residents in their continuum of care and rarely accept out of towners.

rebellleber

So glad you got Hospice in Volvos. Though one of my Alzheimer’s patients (I was a doctor) eventually got kicked OFF hospice as she just kept living, about 4 years after that initial hospice referral! This disease can be so variable.

Hospice can be great as far as providing grief support when that time comes, too.