When we were first met/interviewed for hospice care, they made no mention of a "comfort kit" but as things progressed a nurse made a visit after mom came home from ER visit a few days later and asked about it, was surprised we hadn't received it or a hospital bed and went about ordering the usual drugs via their pharmacy to be delivered the next day as well as the bed. This was almost 3 months ago now. Once mom was in the bed she has not really gotten up and out of it, and I still have questions about that. IE SHE WAS NOT prior bedbound and it's as if they have made her that way, not providing any guidance or equipment to help her up and ambulating. There really is no reason for her not to be aside from now having healing wounds on her heels. Besides that, we were not asked about the comfort meds, simply accepted it as part of their SOP. We are not pill/drug takers, me especially being unable to swallow them. Today, for the first time, a NEW nurse yet again asked to SEE THE ativan and morphine. She opened the pharmacy bag and saw the seal on the morphine was still intact, and claimed (I'm not sure) to have counted the ativan. NO I shouldn't be insulted, Yes I recognize she was probably only doing her job, but yet no one else had gone that far. I am offended. Had I known I would be treated down the road like a criminal (per this nurse they are typically checked at EVERY visit) I'd tell them to keep their comfort kit. I think the only one getting any comfort is the agency who can easily say to give the patient the meds without making a home visit. Cheap/easy/ any bad outcome can be blamed on family....
I REALLLY have come to like the regular nurses we have and so have resisted jumping ship....but I know some of you have reached the conclusion long ago I should....added to this as I may have mentioned....the aides are using a protective cream from McKesson Co. and the aides use it like it is water. I think there has been more left on the bedding or washcloths and towels for me to try and get out (a pink stain) than on mom. I also find the scent very annoying. Oh, for sure it could be worse...but I do have a history of being sensitive to scents...So I did a little research and found EVEN this company makes an UNscented product, and another company 3M makes a product in various forms...cream, wipes called Cavilon that provides a skin barrier and one of them even may last up to 7 days worth of protection! So I brought this up and the nurse was going to contact the team leader. I have even offered for us to get it on our own, but I wonder if that would/should be covered. Other discoveries of the day: I found a box of Irish Spring (BLECH) soap in the powder room. I expected that was my father's doing since he belives the deer are eating his blessed tomatoes and he'd heard it keeps them away. In fact it turned out it was the AIDES who had brought it because they like using bar soap although I'd never seen them exactly using it on mom. I found this outrageous to take advantage of someone unable to voice her opinion due to dementia with a product even SHE would find offensive, let alone me. I also observed a very dirty spot beside the bed where the aides typically stand when tending to mom. Today I realized they were dripping the washcloth taken from the basin of water beside them , and no doubt the dirt from the bottom of their shoes when wet transferred to the carpet. But no problem for them as they don't have to clean it. Are my demands unreasonable? Should our homes and family members be respected? IS it asking too much? Oh, and one more....apparently the attentive nurse of the day did not see what I did: A big wet spot on the bottom sheet mom was lying on. I don't imagine that's a good thing when bedbound and there is a concern for sores developing....but they then took a couple toss pillows and placed one over the spot...I had made the covers with expensive material.
As for mom getting up, just prior to hospice involvement she was UP and active enough to do sets of steps at will and go outside in front of our house or on the patio in the yard. She wound up for a day and night in the ER because she spent a night basically on the floor unwilling or unable to go up the stairs as usual to bed. When she was brought home they placed her on a sofa in the family room which is where we had the bed placed. The bed originally came with a short bed rail and on the first or 2nd day, she got around it and was up in the kitchen (having done the 5 steps on her own) and in the fridge as was typical for her. Longer rails were brought...I'm wondering if we should have them removed totally so she could get up on her own, but now of course there is risk of falling simply from being off her feet for so long.
I don't know what to tell you. I don't know if you are overreacting or these aides are just clueless and that this Hospice is poorly run. I react sometimes without thinking. Its your home and they should be respectful of that and your Mom. I would be pissed too if they took one of my throw pillows and thru it over a wet spot. I would also bring the dirt mark to their attention. Why are they not using a sponge?
To be honest, I would change Hospice providers but that means the equipment being traded out. Each Hospice has their own providers. But then u may luck out the new one uses the same provider.
There can be intense smells when a person is receiving hospice care. Perhaps scented products are preferred for dealing with this. I’m sure it wasn’t done to be offensive. Either nicely ask for unscented or decide to provide the products you prefer.
It’s hard to provide a completely flawless bed bath with a sick patient that can’t really help the process. I’m sure messes were made with my dad, the aides and I cleaned them up.
Does your mother express a desire to get out of bed? Over a few weeks it became so tiresome and exhausting for my dad to get up it became a relief to him to remain in bed