Hi Penny, I know that the hospice care for Medicare in home services is intermittent care so someone is going to need to check on her periodically. How many times a day will probably have to be determined on a day to day basis. Her mental state is a good thing however, physically, if she can't do the small day to day caring for herself, she'll probably have to have some type of in home care other than what hospice provides.

I'm sure there are others out here that have more experience in this area. It's good news that she's able to come home.

It's a good day today!

It is REALLY tough to take care of a parent like that at home, and being on a different floor adds to the mix for sure.

What some people have done is move a bed or a matress closer to where the older person sleeps to assist to the bathroom.

How much is hospice going to do?

Can you afford some overnight help from a health care agency?

It can be done but it takes a very special person to be able to put up with it for very long.

I hope it works out for you.

Not sure why you are afraid of hospice. They are awesome!

My dad and I just went through this, but then mom passed away a day before she was to be transferred home.

For me the decision making process to go hospice involved accepting a terminal diagnosis. (Yes, there are hospice patients who can go years on hospice. I get that. But for me there was that emotional barrier I had to get through.)

Be upfront with family about your fears and experiences are. From your wording it sounds like you and your husband are going to be partners in this, did I get that right??? You might want to talk about sharing the labor. Does your mom have other children who live near by? If so, consider asking them for help. Grandchildren may or may not be able/willing to help with the care. But ask, and point out that helping with care for grandma may actually involve things like cooking, cleaning and doing yard work for their elders so that their elders can take care of their grandma.

Please get care to come in if you can. And learn from the hired care. There are methods for most everything that can make things easier.

And to bridge a touchy subject, caring for your mom will involve personal care. Men can be very reluctant to do this. And your mom may want her male relatives to have nothing to do with her personal care. So to the men who will be helping out I say this: do your best to compensate for NOT having to get involved with personal care. Washing soiled clothing and bed things is a good way to help your wives/sisters/mothers/aunts in this time of need.

Gentle hugs as you begin this phase of your life.

Hi Penny,

I have just finished this journey with my father..he died two weeks ago. My dads brain was fine but his body was just worn out. We were told that he would live for maybe five months when he came home. I was terrified of caring for him and I was terrified of what the end would look like and sometimes I was just frustrated about "how long is this going to last for" which sounds awful but it is how I sometimes felt. My father never accepted that he was dying and was always after that miracle drug or procedure that would make him immortal.

When dad came home I had to help him into bed and empty his urinal thing and tucking him and mum into bed at night was bitter sweet. He was very weak at first and then dad got stronger for many months and regained some independence. The last week of his life was not traumatic there was just a sadness in his eyes that hadn't been there before.

I am happy with the fact that we (my husband and I) cared for him at home to the end. I know I could not have done it alone.

We are now caring for my mum and she is physically well but has a combination of brain injury and dementia. Mum is easier to care for.

It took us some time to get services in place for mum so with that experience behind us ..by the time we were faced with caring for dad I was able to insist on services being in place before he could come home.

Will you have assistance with showers and respite?

I have found this support group to be really helpful....and sometimes just a safe place to process my feelings.

With hugs
Kim

Thanks so much for all these great comments. I knew I would get some good info and advice from this group.
Yes, my DH (sweet man that he is!) and I are all there is, other than my wonderful "ex-step-sister-in-law" - figure it out!) who has been there for my mom here for years. But she can't do the day to day stuff that we will have to do. My fear of hospice is not about the program - which sounds wonderful! - but rather our ability and, yes, endurance to see it through. Mother has some resources, thank goodness... but I hate to spend those in the beginning of this journey as we may need them more later - and it is, after all, my only inheritance, such as it is.
We are hopeful that she will gain enough strength in rehab to be able to go to the bathroom, etc., but as the hospice lady said today, that will change... and then she won't be able to. I am willing (reluctantly) to do what must be done - as is Layne (the DH). But Mother is very proud and modest and having Layne help her will be exceedingly difficult.
Right now the immediate problem is getting her to realize her situation. Even at almost 95, she can't believe this is happening to her! "All these years, I've been doing fine! What happened?!" She thinks when she comes home she won't need the oxygen... but almost certainly she will. And that will mean getting rid of the gas heaters... yikes! And possibly even the gas stove in the kitchen. So many things to deal with...
Thanks, everyone.

My best advice is don't rush into things. Get mom home if that is possible. It's summer so no need for heat yet. Don't replace the stove just yet either, BBQ if you must.

I say this because the reality is that while mom may live for months or years she may also only live for days or weeks. The first two weeks at home will be your guide to the future. If mom manages that well you can start making needed changes.

I would also look into inpatient hospice. While many people dream of dying at home it's not always the best situation for the person or the caregivers. Inpatient is also 100% covered by Medicare so if mom needs more professional care this is a better option to preserve finances and give mom the best care.

While it may be difficult for Mom to accept DH caring for her personal needs she may come to accept it you do it gradually.

pepper makes a good point too.

My mom pretty much takes care of her own personal needs so eare not quite there yet


But she does occasionally she makes a poopy mess in the bathroom.

DH does not mind cleaning up after her but is TERRIFIED of going into her room to wake her up.

You will work out a division of labor as you go along

Just remembered something else. Before we make the decision that my Dad had to go to LTC we found an agency that would send someone over a couple of times a week to help Dad shower.

It was called Home Instead and was very reasonably priced.

Perhaps it is different in other states, but here in TX Medicare does NOT pay for inpatient hospice. Well, rather the hospice services are covered but not the room - which runs over $200/day. That's $6000+ per month. Mother's $$ will run out rather quickly at that rate. So for that reason and others, mostly that she wants to be here, we do hope we can manage things here at home.
Like Kim's dad, my mother seems in complete denial that her body is not going to last forever. She just goes on about how "all these years I've been doing just fine and now this! I just don't understand it..." Good grief.
Hospice will send out aides for showers and nurses a couple times a week and other such services, plus be available 24/7 if we call. I think Mother may be persuaded by the hospice person telling her that her doctor thinks she should go home on hospice, rather than it coming from us. That's what the hospice woman said could happen as indeed they did hear from her doc that hospice was a good idea.
The good news is she is getting stronger... but as the hospice lady said to us, that won't last. Things will change and we will have to adapt.
Such a journey we are on.... thanks for all your support.

Sounds good Penny! The hospice service is more help than I thought you would get.

Hang tight Hun. I know you are scared but you will be fine. I still think you don't have to TELL your Mom it is hospice. Just let her think of it as some help for her to get better.

This is a good resource on Medicare coverage of hospice. Medicare is federal so it is the same for all states. If your hospice doctor feels you need a respite or mom needs inpatient care it is covered. Usually this is the point when sedation or pain relief is needed.

http://www.medicare.gov/Pubs/pdf/02154.pdf

That was my understanding of it too Tigg

In our conversation with hospice, they did indicate that a 5-day respite was available with Mother as an inpatient to give us a break but longer than that would be charged at the $200+/day rate. See the paragraph on "Room and Board" at the bottom of page 7 in the booklet Tigg linked to. We hope that having her at home will work out ok.
Today we go for her "Quality Care Plan Meeting" with her nurses, PT, OT, etc. I'm not sure if hospice will be mentioned there but we should get an idea of how they see her progress and prognoses.

I'm sure it will all work out just fine!