My mother was in a SNF with goals of PT that I didn't agree with.........but with the pandemic they didn't listen to the family's wishes.

After that I brought her to assisted living but took her out after a little more than a month.

My mom has vascular dementia, is incontinent and bedridden. When I took her out of assisted living she came back with lab results, which it seems that the doctor who ordered them never followed up on................pitiful.

So she had a brief hospitalization when I saw the abnormal labs, and a some specialists were consulted.

She came home on hospice care. They were great at setting up to have a hospital bed delivered and a compassion kit.

2 nurses have been here to see her, but I'm waiting on further plans.

My mom is 94 years old..........nearly 95.............sleeps most of the time, except when I try to feed her..........she drinks ensure, and takes a little bit of solids............generally poor appetite.

So right now she was sent home from the hospital on hospice care..........and I am trying to keep her comfortable, and want no aggressive diagnosis or treatment.

As I said, I'm trying to feed her a bit, give her her meds, and deal with the incontinence.

I have access to hospice, and so far they have been quite helpful...........access to their site for nursing questions 24/7, and a hospice doctor behind that...............I'm still finding out the details.

For a 94 year old woman, with vascular dementia, incontinence and who is bedridden........she has a wheelchair, but doesn't really think she could get out of bed, and if she did I'd need help with transfers............I don't see the point with transfers to a wheelchair, as she sleeps so much, but I'll see what hospice says.

I had looked into additional home care to help with extra hours outside of hospice..........they provide some but limited home help, and right now I've just requested that from the nurse, but nothing is set up.

I'm the primary caregiver, and right now feel that comfort is the primary I'm dealing with the incontinence myself, laundry, and as I said trying to get her to eat a bit.

For a patient in this condition.............who mainly sleeps, eats a bit when I feed her, but is in the advanced stages of vascular dementia, would you just do what you could for her at home?.........and have hospice's services; or would you hire additional home care health also, even though you're there for her most of the time........can order in supplies, etc. and sometimes leave briefly to get immediately needed supplies.........extra tissues, plastic bags etc. She usually sleeps in a hospital bed supplied by hospice, but I'm not sure about the requested home health services requested to hospice............I'm told various things by different people from hospice, about when these home health aides can be placed........some say it can take a while, but I need further details.

I have to get out of the house at times, ie need a haircut, etc, have a dog and cat to take care of.

Would you make a declining patient as comfortable as possible, with hospice's help, you as the primary caregiver..........or would you look for extra help say with home health aides? For a patient on hospice, do you think that looking for home health aides is a good idea.........I've spoken with various agencies..............and what is your experience with home health aides if you've used any services? Any helpful comments welcome........thanks.

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Hospice has Volunteers that can come and sit with your mom.
They can not do any "hands on" care but they can be there if she needs anything. They can talk to her, read to her, watch TV with her, listen to music. you can go get a haircut, shop do what you need to do. Usually the time frame a Volunteer will be there is 4 hours. (the reason for 4 hours is in that time the patient would probably need to be changed, have a medication or eat and the volunteers can not do any of that)
Hospice should provide you with all the supplies you need for mom. Wipes, gloves, lotions, creams, briefs or pull-up. And her medications should be delivered to you so you don't have to go get them. They can also request equipment so it will be easy for you to transfer her from the bed to the wheelchair. A Hoyer Lift while large and complicated looking is pretty easy to manage.
I cared for my Husband on Hospice and I did have caregivers come in so that I could get out. (I was lucky enough to be on a program through the VA that helped pay for caregivers) But I did all the prep for food, I got him up in the morning got him into the shower,(sometimes the CNA from Hospice was there) and I would get him dressed so the caregivers I had came in around 9 so most of the work was done by then.
If you can get Volunteers through Hospice use them, if you can hire caregivers a few hours a few days a week do so. (paying for the caregivers should come from moms assets not yours) Trust me the more help you have the more "sane" you will stay.

A bit of info on Volunteer hours. Medicare has requirements that volunteers are trained and they are specific on the training that is given and Volunteer hours must make up a certain number of patient care hours. So it is vital that Hospice use the volunteers they have for patients. Volunteers (like me) WANT to help we, most of us, have had experience with Hospice and this is one of the ways we "pay back" .
Helpful Answer (4)
Reply to Grandma1954
Jasmine9 Sep 27, 2020
Very much understood................thanks for your input.
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My father came home from rehab on hospice this summer for differing reasons than your mother. Hospice will supply all of the medical equipment and supplies you need. As far as extra help, we at first looked for volunteers to sit with dad. We used people from his friend group, relatives, and his church to sit with him during his least needy time of day. For him that was afternoons. This provided a break for us to do errands and rest. We were blessed to have people gladly step up to do about a 4-5 hour time of staying with him. When his needs grew, we stopped that and hired sitters through the hospice agency. They weren’t employees of hospice, but had left their names and contact info with the agency and had experience caring for hospice patients. They were a huge help, could do all we needed with hands on care. Stay in regular communication with your hospice nurse, they are great at guiding you through this and answering questions. I wish you peace as you walk through this
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Reply to Daughterof1930
Jasmine9 Sep 27, 2020
Thanks a lot. I'll talk with the hospice nurse about extra care..............hopefully they will know of reliable agencies that you can trust. Sometimes, talking with various home health care agencies, and looking at reviews (?validity) can make things difficult to choose an agency for time off. Hopefully, hospice will know of extra help that is reliable. I thank you for your input on this.
I hired home health help once I couldn't get enough sleep to function during the day. That turned out to be two days before my dad's death, and frankly, I waited too long.

Avail yourself of hospice volunteers when possible, then consider hiring help for when you need to get out to do other things.

Now that your mom is on hospice, there won't be any aggressive treatment offered or suggested, so don't worry about that. The goal is to make her comfortable, and that's it. Her meds may or may not even be necessary at this point --ask the hospice nurse about that.

Just don't allow yourself to get run into the ground.
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Reply to MJ1929
Jasmine9 Sep 27, 2020
Thanks for your response..........I will speak further with the hospice nurse, as I need some hours to get out to do other things as you say, but want to make sure that any home health coming into the house is reliable and honest............obviously it's a concern...................I'll ask about hospice volunteers or reliable hired help from the hospice team. Thanks again.
Jasmine, I personally, were my Mom's assets adequate to afford it, would get as much care as I was able to so that I could have respite and do the things I need to for my own life. You have chosen to do this care inhome and it is really 24/7. I recommend getting yourself all the help you can afford. Do use an agency where people are adequately vetted, as they will be in your home. Good luck.
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Reply to AlvaDeer

My husband was under Hospice care for 22 months, and was bedridden with vascular dementia, after having a massive stroke years ago. I was his sole caregiver, other than the hospice nurse coming once a week and their aides coming twice a week to bathe him. Because my husband was still able to go poop in the bedside commode(up until the last 6 weeks of his life), I had to hire an aide to come to my home to put him on the commode for me as he was too heavy for me to pick up myself. And because I really only needed someone for about an hour a day, I couldn't go through an agency as they usually require a 3-4 hour minimum, so I called Senior Services and they gave me a name of someone who used to work for them, who was now doing CNA work on her own. She ended up being a Godsend, as my husband was then still able to poop in the bedside commode, and it made it so much easier to clean him after he did. So depending on what exactly you will need an aide for, will depend on where you look for one, because remember, Hospice really doesn't do much in the big picture of things. 99.9% falls on you, so do whatever will make your life a little easier.
And because my husband was bedridden, I didn't have to worry about him trying to get out of his hospital bed, so I could leave for short periods like going to the grocery store, getting a pedicure, or lunch with a friend, without having to worry about him. I also had a security camera in the living room where he was, and I could access it on my phone anytime I needed to, to check on him.
God bless you for taking on this task of caring for your mom. You will be glad you did.
Helpful Answer (1)
Reply to funkygrandma59

Yes, this is a 24/7 far as home health care, I'm looking at several agencies........what things do you look for to make sure they're adequately's always a concern to let people in your home..............perhaps hospice would be able to know of reliable agencies. So far the nurses from hospice have been very helpful with medical matters.........and I requested home health services for very limited times that they offer.................I wonder if asking the hospice about reliable extra home health that you can trust would help. I'll have to ask. Thanks for your did you you look for reliable home health aides? As you know, this can be a very large task in a 94 year old mother who is declining and on hospice, has vascular dementia, is incontinent and bedridden.
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Reply to Jasmine9
notgoodenough Sep 27, 2020
Jasmine, I'm actually going through the same thing with my mom.
I got a list of names from the hospice SW. I'm going to look for someone for overnight to help. This was the suggestion from mom's hospice nurse.
If your mom has a long term care policy, please check it. My mother has one and it will cover the cost, whether we go through an agency ( policy will pay direct) or through a private caregiver ( policy will redeem us). If she has one, call and ask what their policy is.
Gold luck!
You might want to get a lift Medicare will normally pay for manual one. If you have room. They can saver for your back and staffs too. When staff comes to help with care suck up all the knowledge you can from them.

google how to remove urine smell. We use proxcide, baking soda, soap and water. To keep the bed clean.

if you have friends/ family willing to sit with her while you get hair cuts run errands that’s helpful, if not you will have to hire someone or do without.

my mother seems to like her praise music, so sleeping or wake it’s normal on low.

loving patience is what is needed now, so breath and try to enjoy the love you are giving her.
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Reply to Ohlas1

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