Nursing homes

[fade2blk]

Hello all, I am a lurker and first time poster to these boards. I have a few questions for anyone who had a loved one pass away in a nursing home.

My grandmother is Stage IV NSCLC with brain mets. In January, she had a seizure and was hospitalized. She became very weak and unable to do a lot for herself. Upon her release from the hospital, my grandfather had her transferred to a nursing home, as he is not physically or emotionally able to care for her at home and the rest of the family lives out of state. Her doctor's gave her a couple of months left, and that was six weeks ago. She is now showing some signs that the end may be coming soon, i.e., increased confusion, weakness, not eating, and yesterday, her BP was really low, so we think the end may be near.

Here are my questions: How did your loved one's nursing home deal with these things, from an end-of-life comfort care perspective? Did you have hospice involved as well? My main concerns are the physical changes that occur in a dying person, i.e., noisy breathing that can occur (she shares a room with someone), and all of the visitors that are bound to come if she is indeed entering that final stage.

I just feel that the nursing home will not give her the privacy that is needed at the end of life, especially since she shares a room. There are no private rooms available, unfortunately. Bringing her home, even under the care of hospice is not an option, my grandfather won't hear of it--we have tried to talk to him. Does anybody have any suggestions on how to make this as comfortable and as dignified as possible for her?

Thanks for reading and responding!!!

[DeanCarl]

I'm sorry your Grandmother isn't doing so well. And I'm also sorry your Granddad can't deal with this at home, even with hospices care (though, in someways I understand how he feels. Hospice can do a lot but they can't help much with the pain of watching someone you love go through this).

I really don't have any answers for you other than to keep fighting for your Grandmother's dignity as best you can, and to offer some prayers for all of you.

Dean

[Elaine]

First, I am so sorry to hear your grandmother is not doing well. I will keep her and the rest of your family in my thoughts.

The hospice in our area will also serve patients who are in nursing homes. You might want to check with your local hospice(s). Also one of the hospices has a 10 bed unit for patients who can not or do not want to be at home during their final days. You might want to check into that too. Hope this helps in some way.

Elaine

[mhutch1366]

I too know someone who was checked into hospice for the last few days, when family could no longer deal with the medical or pain control issues.

Please see if that is an option, and bless you for caring about your grandma's dignity at this time.

Your grandma and your family are in my prayers,

XOXOX

MaryAnn

[fade2blk]

Thank you, Mary Ann, Dean, and Elaine. I appreciate your replies. I have been lurking here for about 2 months, and so I feel like I know all of you. I am saying prayers for you guys as well as everyone else on this board. I am amazed at the love, strength, compassion here, and read this board frequently.

I am going to see about getting Hospice involved in my grandmother's care at the nursing home this weekend when I go for a visit.

MaryAnn, we could be neighbors. I live outside of Annapolis.

Hugs to you all.

[Snowflake]

Just my two cents on end-of-life and nursing homes...

Two of my grandparents died last year in the same nursing home (and never occupied it at the same time) - my paternal grandmother who had been in the nursing home for three years due to Alzheimer's and no one being able to care for her at home any more (think of having a 2 y/o that got out of the crib at night and could REACH everything AND open child-proof locks). Family was notified that the end was near and those that could make it were there with her at the end...

Maternal grandfather died of cancer of the bile duct/heart failure/old age. Again, family was called that the end was near and he did not go out "alone".

I do not believe Hospice was involved in either case as it was not a long drawn out affair...

My paternal grandfather died 11 years ago, at home. He died of extensive prostate cancer (spread to bone and brain) and Hospice WAS involved. Again, family that "could" make it, did.

Now, some family insight - for the paternal side of the family, my father is the only "child" local - right next door for my grandfather's death and within ten miles of the nursing home for my grandmother's. His sister lives about 90 minutes away and made it back for both deaths, his brother lives in Florida and made it back for both funerals - and KNEW of the time frame involved prior to each death... The entire time the grandparents were living at home (my grandmother with Alzheimer's before it got "so bad"), my father was expected to care for them and the other kids would occassionally flit in and out, not having to deal with the parents on a daily basis. The stress of caring for his mother really did bad things to MY father and mother as they were responsible for getting rid of the car when she started getting into accidents and getting lost...they were responsible for making sure she didn't just walk out of the house at night (she would NOT stay at their house at all, HAD to stay at her own)...and the list goes on.

I would have to say that the only way you should be involved in the person being "home to die" is if you are the person taking care of the patient. I think that your grandfather is very wise in knowing his limitations and the rest of the family should respect HIS wishes, as well. No matter what you may think of his choice, he has been married to the woman for some time and probably has VERY deep feelings for her and along with those is handling his own despair at the end that is approaching. If you have questions regarding the nursing home she is in, call and talk to someone in charge. The thing to realize is that at MOST nursing homes, it is a "one way trip" as the "patient" is NOT resting up to a full recovery and returning to their family home....

As for your grandmother's roommate, Grandma's family should show respect by not imposing on "her half" of the room or her peace unless invited - which MAY happen, as Grandma and her roommate probably have some kind of friendship since they live together. Obviously, life is not perfect and there will be some stress - on both sides (roommate and grieving family).

Hang in there, it really is sad to lose a grandparent - they're so very dear in their knowledge and love...

I hope it all runs smooth for your grandmother and her passing is peaceful.

Becky

aka Snowflake

[Ry]

Yes, hospice will come in and serve individuals in a nursing home. The best solution would be (as someone above suggested) a residential hospice. She would then have a private room and a place for family. We have a beautiful residential facility not far from us. I hope this is an option in your area. Call quickly though as there may be a waiting list.

All the best~

Rochelle

[TeeTaa]

I'm going to make the same book recommendation that I made on another post a couple of days ago, but I think it's especially pertinent here. The book "Final Gifts" by Callanan and Kelley (two hospice nurses) deals with what you can expect in the final stages of your loved one's death. No, it does not address the nursing home issue, but there is much info about hospice services and how you personally can be more comfortable with the things that are going on and how you might be able to better interpret communications that might be manifesting themselves as "confusion." It also talks of what physical changes to expect.

I got a world of information from the book . . . I think we all should read it, regardless whether we're dealing with this horrible situation.

Peace to you and your family,

TeeTaa