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Topic Hospice for grandma Go to previous topic Go to next topic Go to higher level

By gonnagobald On 2009.10.25 16:48
We met with grandma's dr on thursday and i told him i needed help really bad. Grandma fell 6 times in just a tad over a week. More confusion, more irritation and she is sleeping alot more than usual and she says she feels weak. The dr confirmed what i had already thought, that she had lost more weight. 7 lbs in 30 days that she has lost. She is down to 80 lbs and that is with clothes on.

He ordered home health. HH called me the next day and we have an appointment set up for tomorrow (monday) to assess her needs...although the dr did tell me that he felt that grandma was 'failing to thrive' and that he felt that she met the criteria for hospice.

HH told me that there were differnet hings we could do as far as making her moods better and also possibly prescribing marinol to help her appetite. Grandma doesnt want any meds. at all. no feeding tube, no nothing. She also signed a DNR this last thursday with her Dr there saying that she wanted othing but comfort measures. What exactly does that mean? The dr said she was definitly in end stages of the PD. HH called me back after grandma told me she wanted no meds and said they felt that she would be better off with Hospice and that it seemed as though that is what she wanted. She only wants to die in her home. I dont know alot about hospice and i want your guys' opinions, not some general statement off the web when it comes to PD patients and this situation. Will they be helping me give her baths? Feeding her? What will they be doing? will they be here once or more a week? What do i need to expect here?

My biggest fear is grandma dying and me finding her. I have three little boys here and my husband works full time. I dont want them to see her when she passes. What can i do here?

thank you all again for your reading this.

By annwood On 2009.10.25 17:18
Sorry that you are going through this but it sounds as if Grandma knows what she wants. A DNR stands for Do Not Resicitate, in other words no codes and no efforts to revive someone when they stop breathing.

I can't say enough good things about Hospice. I had them here at home for the last three months of my husband's life. They will provide all medications (PD related), a hospital bed, bedside commode, bedside table and all supplies you might need. This is at no cost to you. Medicare covers all of Hospice care. A nurse will be assigned to you and she will come once a week to evaluate your Grandma's physical and emotional condiiton. She will also be a great resource for you and will explain things at every step. She will also take care of all the communication with your physicians. There was an aide that came twice a week to bathe, shampoo and shave my husband. They do not provide actual nursing care in the home but you can utilize the inpatient Hospice if that becomes necessary.

When it was apparent that my husband was dying Hospice came more often the last week. They provided the medications that kept him comfortable. They will give you a very good idea of when the death will occur and you can then plan for arrangements for your children. There are some very definite physical clues that occur before death. When the patient dies you call Hospice and they send out a nurse who pronounces them, contacts the Coroner and the funeral home. They were here within 30 minutes and it was 1 AM. She will stay with you until the funeral home arrives.

Hospice will send out someone to do an evaluation before accepting the patient. At that time they will explain to you that they will not provide services that will prolong life. No IV's, no ER's. They do treat infections with antibiotics.

Congratulations on having a physcian who is willing to see your Grandma through this. You are lucky there.

Please feel free to ask me any questions you may still have.

By gonnagobald On 2009.10.25 18:48
Thank you ann, your info was helful. The DNR i know was a good thing, it was just hard because grandma couldnt sign it herself and the dr wanted me to do it. i just couldnt. he had to sign it first and reassure me that i only needed to witness itt. its just a hige thing to put your name to somehting that basically says 'let me die on my own terms'. it was just hard.

we have a wonderful dr and im thankful we found him as he is literally the only geriatrics dr we have in this town. i asked him if he wanted to see grandma in a month for a check up and he said no, it was only as needed. is that because hh and hospice will be taking over?

By annwood On 2009.10.25 19:57
I don't know - perhaps he just doesn't want to put you and your grandmother through the ordeal of going to the office. He did leave the door open if you need anything. Hospice will continue to work with him for orders regarding meds for your grandmother

The endstage things are very hard so don't feel bad about the DNR. I had to make the decisions to stop treatment for my mother and my husband. It is a HUGE responsibility and not to be taken lightly. There is no way to feel good about it other than to understand that you are carrying out the person's wishes.

By gonnagobald On 2009.10.28 14:47
hospice came out yesterday and the nurse right away noticed how frail grandma is. when we were at the dr's office this last thursday i was so worried they were going to think i wasnt feeding her because of how thin she is. he told me her protein levels were beyond better than what he expected so he didnt feel that i was starving her. still makes me feel like im doing something wrong.

grandma has been aggitated at the smallest thing i do here lately. the nurse picked up on that when she was here and saw how mean grandm was to me. she told grandma that she felt that grandma needed to see a social worker to knwo her options if she is *that* unhappy with me. grandma did a complete 360 and insisted that i was doing a wonderful job, she is scared to go into a nursing home and even though i refuse to put her in one, i felt like the nurse was on my side on how grandma treats me.
i am dropping college, i cant keep up and im very upset about this as well as a bit resentful. i know grandma cant help her condition and i dont blame her for it, but this isnt how i wanted my life to go. i feel selfish for feeling this way. my oldest son was confirmed with H1N1 and he is at his dads house until he is symptom free for 48 hours so grandma doesnt get it. i feel stressed, i feel overwhelemed and grandm doesnt want to stop being so mean. as soon as the nurse left, she wanted to call a truce, but i was so upset, i just couldnt talkt o her for a bit. when the nurse was here, she was tryring to make grandma understand that there are wayyy too many trip hazards in the house, grandma has stuff literally everywhere. its not dirty or filthy, just that she has alot of things. the nurse wanted a hope chest moved from the front of the bed becuase she is concerned about grandma tripping over it and grandma was adamant and was almost throwing a fit because she doesnt want it moved. this nurse has her work cut out for her but she is also tough and i like this. i think she can make grandma understand in time.
grandma is having a harder time swalowing and refuses that i use thick-it to make her drinks more manageable. she gulps so hard over a little sip and when she eats, it sounds 'moucous-ey' and she spits and coughs while she eats. after every meal, i am literally covered in food.

i feel overwhelemed even with hospice here.

By annwood On 2009.10.28 15:09
You are overwhelmed! As caregivers we seem to give up any life of our own. It is appropriate to feel anger, resentment, fatigue and desperation. Those are normal reactions to a terrible situation. Do not feel guilty - you are doing a terrific job.

Sorry about the flu - it is just one more thing to deal with. Hopefully that will reslove without any problems. Take the time to rest from that parenting role for a few days. Dad can handle that.

Quitting school for now is hard. Just tell yourself that it is temporary and you will be able to go back in time. The onjective for you right now is to reduce your stress level. As I recall, school can be stressful!

Grandma will never be "happy". Just part of this disease at this stage. Do what you can and ignore her criticisms. Even if you did EVERYTHING for her it would not be enough. Remember this is the disease and not grandma. You are the caregiver so you are the one to receive the brunt of her frustration and fear. Strange how that works, isn't it?

I am happy that you have Hospice involved. Hopefully they will be able to lighten you load. I think they are there more for the caregiver sometimes than the patient.

By susger8 On 2009.10.29 08:11
Don't let anyone make you feel guilty about your grandmother being frail and thin. That's one of the things that happens toward the end stage of life -- you really can't prevent weight loss at that stage. They just don't have the will or the energy to eat enough.

Did the hospice people give you some literature about what happens at the end of life? I found that very helpful when my mother was in hospice.

This is very tough to go through and it IS overwhelming. We are here to help, and to listen if you just need to vent.


By SandwichMe On 2009.11.02 13:54
Hospice is wonderful! We had them for my FIL the last three weeks of his life. He was cared for at home for two weeks with Hospice daily coming to evaluate but had a private service to do 16 hour assitance with his care. He needed two people to transfer him.

The agitation often happens towards the end of life for a terminal patient, PD or not. It's actually called "terminal agitation" and most hospice providers know it when they see it. That's when safety is a real issue, because the person wants to move around...bed, chair, potty, bed, walking....all in a matter of minutes but forgets that they can't walk alone.

My FIL was admitted to the inpatient hospice center for a few days to help get some medications under control for the agitation. The plan had been a weekend stay. Once there, he didn't come home. He stopped being able to swallow after 12 hours and we chose to let him die there. They were amazing!

I'm not here to tell you that your grandmother will die any minute, but hospice care at any stage is a godsend.

By gonnagobald On 2009.11.03 19:31
Hospice is a big relief but right now since we are al new to each other and getting into a routine, its a little stressful, not because of them but because of trying to schedule everything. i mentioned before that i quit college and now after seeing all the different things we are having to do and the more care i am having to do, i see i made the right choice. i would have never been able to keep up with my classes.
grandma seems to be feeling comfortable with hospice so far. A socail worker came out because the hospice nurse saw how she treated me and told her that she needed to know her options as far as placement. if she wasnt happy here at home, then she needed to be placed elsewhere. the nurse and social worker also told grandma that she needed constant care and if she drove me away then her only option was a nursing home. in private i told them both that noway under any circumstances is she going anywhere. i dont care what they say, my grandma is not going to a home. i promised her from day one that i would care for her and she would die in her own home. Im having a hard time letting them help me. we have a bath aide and i find myself in the room making sure they are careful with her as well as cleaning her really well. maybe its been my exprience of seeing bad care in the past but i am really worried that they think they can just put her in the bath, throw some water on her and call that a bath. when i think of a bath, i think of everything being washed, and that means her privates as well. thats another thing, i dont want my grandma to be embarrassed by having a stranger wash her there, i make sure to do it. im not sure what to do, im afraid if i put all my trust in people, they wont treat her right. what do i do? the social worker even said she could get us help if my husband and kids and i wanted to go away for the weekend. i just cant even fathom having anyone here alone with her without me. what if someone hurts her or steals from her or anything else? i mean my grandma can push a person to their breaking point, i wouldnt be able to live with myself if someone hurt her.

how do i learn to trust people and let them do their job?

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