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I did not expect them to be present 24/7, but the expectation and dependence on us as sole family is more than I ever anticipated considering my own health and that dad is 104 and neither of us alone or together has the physical strength to lift her if she poos or pees in the depends or on a bed pad. This afternoon, on my own, I attempted to deal with the situation and because she is uncooperative (unsure if she is being deliberate or it is the dementia...seriously hard to tell due to her life long personality) it was miserably difficult trying to get the sheet and bed pad out from under her which were soiled and especially the pair of Depends that the aides had gotten on her which were fully loaded....Hospice leaves a card with your "team" and a phone number that clearly says to call day or night; when that number picks up the message is an off-putting "we're sorry we missed your call...to leave a message etc, push 1, and then you can't but can wait for an operator who will then pass the message on. Today I spoke with mom's social worker whom I think I met the beginning of this week who came across as lacking empathy or understanding. They're big on referring you back to handbook they leave with hints on how to do various tasks, but without considering the capability of family, their own health issues, or lack of training. Some may not even be able to look things up on a computer. I conveyed we did NOT have unlimited funds and I did not intend to spend $20/hr with a 4 hour minimum for someone to sit on their ass and do nothing. ANd did they have anyone to suggest...they couldn't recommend anyhone, but she had a few names families had used before...names I was already familiar with as my agency has a prepared list with a disclaimer ready to share with people. I thought and expected these folks to be at the top of their game. Thus far not too impressed. Especially when I described how we had to call 911 AGAIN; mom had gotten her legs caught in the bed rail to the point I took it down to free them, and then she slid off the bed onto the floor. The fire guys suggested a pad they knew of that goes over the rail; when I asked about that the nurse on call who called back was not sure, and not sure if the company they used had them. She suggested putting blanket over the rail, clearly not comprehending the determination and capacity of my mother to defeat that.. I don't feel very supported by this organization and am most likely going to ask for another social worker. For starters.

The thing is that Hospice is a Medicare thing so does not differ from State to State. The problem I see here is not a Hospice program problem but an individual Hospice agency problem. They should be abiding by the Medicare criteria. A Nurse may only come 3x a week but she is to be on call 24/7. My Dad died in his sleep. When Mom called the Nurse, she was right there to get him ready for the funeral home. She called the funeral home. Staff is to be compassionate, if not there is someone above them. And yes...they order the supplies. When in doubt, you can always call Medicare.

The discrepancies happen because that is the person's personal experience. Some people don't like to complain. My Mom didn't. I did and so did my RN daughter. The staff are humans and as such you get the ones that bend over backwards and the ones that do the bare minimum and sometimes not that.
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I'm positive that hospice doesn't ever supply aids or come more than for a few hours a day and not every day... maybe 4 x a week. However our hospice supplies all Depends and pads so I don't think you have the best hospice available. I've been told it's important to choose a larger hospice company versus a small mom and pop one because they have more "connections". We chose a large one and it is also a non-profit which I like the idea of. In practice it isn't offering much care (yet anyway). I, like you, am adjusting to the idea of hospice because I personally want things for him that they won't do. They supposedly have volunteer companions who could come visit but they don't do care tasks so I doubt that would help solve your problem. My dad is a Vet and when at home was provided a caregiver 4x week for 2 hours a day. Perhaps your mom has some other supplemental insurance that might help if hospice orders it? I think you are going to have to find an agency to get help for the $20+/hr.
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https://www.amazon.com/dp/B0009STN9M/ref=cm_sw_r_cp_apa_glt_fabc_286MFM3F11S2BT22QFSN

I think the above item is what you are looking for.

You sound SO burnt out. ((((Hugs))))). If you are not ammenable to facility care for your parents, consider using their funds to hire someone to do the housekeeping and laundry. This will free you up to do the caregiving.
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When my father was dying of colon cancer, he was placed in hospice. They were never readily available by phone and it sometimes took hours for them to respond. I personally felt it was a nightmare situation for my family. The night/early morning I knew the end was near, I made five frantic calls to the hospice nurse. Each time, she had me increase the dose of morphine and told me I was doing "great." I finally begged her to come to the house. It took her
1-1/2 hours to get there. My father passed away shortly after her arrival. It seems her main concern was disposing of the leftover morphine. I know many have had wonderful experiences with hospice, but it was not mine. I have begged my children no never put me in hospice. It has been many years since my father passed away, but the nightmare experience still lingers.
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MJ1929 Jun 13, 2021
You should have fired the hospice company and hired another one. Just like any other business, they aren't all run by competent people, but those that are (most of them, I'd say), are absolute saviors for families.

Don't let your experience taint all hospice experiences. You're putting an enormous burden on your children with your request.
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You need a team to care for anyone that’s bedfast.
You not only have a bedfast mom but an 104 yr old dad who needs some degree of his own assistance as well. Even if dad was able to himself qualify for hospice. They still would need to have either family of inhome caregivers for non hospice time.

Hospice is a wonderful MediCARE benefit but it never ever will be 24/7. You may find a better hospice group, but they all will be limited to 2-3, maybe 4 on site visits per week of a few hours. Hospice will require that there is family present to do whatever oversight needed for all the other hours.

Realistically they both would get the care and oversight needed by both of them going into LTC in a NH or MC facility. Has this been discussed and if not, why?
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My mom's hospice supplied equipment such as oxygen, a nebulizer, etc. They offered a hospital bed, which we didn't need, since my mom had as adjustable bed already. They also provided most of her prescriptions.

They did NOT supply Depends or Chux pads. We bought those ourselves. They made it very clear from day 1 they did not provide those supplies routinely; they only got those items as donations, and tried to give them out very sparingly to either people who were truly destitute, or in an emergency situation. I didn't find that policy objectionable, especially considering the cost of the items and my mother's ability to pay for those things herself.

When mom passed, I donated her leftover supplies to her nurse.

If you feel this particular organization is failing to meet your needs, then I would look for a new one. Not all Hospices are created equal.
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Isthisrealyreal Jun 13, 2021
I think that the hospice you used was not being honest.

They bill Medicare for everything that they provide.

Could be a profitable sideline for the company to get paid for something that they don't provide and get donations from families that just lost a loved one.
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Fire that hospice company and get another one. It's pretty easy, and the two companies will coordinate with one another to swap out the equipment in a short time frame. I had to fire the first hospice company I'd hired for my dad (Vitas), and they and the new one switched everything out in the span of 45 minutes. Dad only had to go rest in the master bedroom for that time and was none the worse for wear.

I can't stand a hospice company that isn't responsive or isn't empathetic. You don't need to tolerate that -- they work for your mother AND her family, and if they can't get on board with that, then punt them.
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Have you looked into churches or non profits as a form of relief or to get you additional supplies such as the padding?
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gdaughter Jun 13, 2021
No. It's not that we couldn't afford them so much, it's that I think that they are essential for her health and safety and from what I've read should be covered, particularly if an MD orders it. It's the weekend,so I will have to pursue this more tomorrow. In fact a nurse made a visit while the aide was here yesterday and they were able to give her a bedbath, and she was going to advocate to the "team leader" for the weekend, and if she didn't get the okay from that person, would then try with the weekDAY. This is insane imo, that one should have to beg when advocating for the well being of a hospice patient. MEntion was made of slicing pool noodles (like caregivers have nothing else to do), or getting extra pillows (which could be easily moved or tossed out, not to mention getting wet with urine or dirty with poo and having to be thrown out or generating more laundry. And they mentioned some kind of bolster type pillow (I'm thinking along the lines of a body pillow) which they get for those having seizures. Much of the process is trying. This doesn't have to be. ALso asked me about if we'd want a mat for the floor should she fall/roll out of bed. She has done this, with zero injuries. THe floor is padded and carpeted. This they apparently could consider getting, the fact that she puts her fat lets/feet through the rail and gets them stuck is not a concern, even though it results in having to call 911 at some point. Really seems to me that hospice seems to put a lot of the work burden not only on family, which I can understand to some extent, but also on the local fire depts.
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Everything reported on this forum is not necessarily true and standards may vary in different locations. I did not have any concern or interest in hospice issues as much prior as is now. I have studied the hospice movement and in its truest form, I think it would be more help than this Americanized version laced with Medicare issues we have to accept. Stay turned.
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Momheal1 Jun 13, 2021
My heart goes out to you. I can hear the frustration - sadness - anger and helplessness from what we lack in this country. I agree on every level. I have said to myself the many things I hear you saying here like “ I want to care for my mom but for the love of god can there be a little bit more guidance here - a little more help of how to achieve this new job I have taken on”. I hear you saying “I could manage this a whole lot better if there was a program that Actually guided me through”.
Family caregivers don’t know about which supplies are best - which programs can help us - what help is out there and we most certainly don’t have the time in the beginning to research it all…that’s why we are burnt out! 3 years in and not one social worker has given me one piece of advice to actually help.
as unfortunate as it was that after my moms stroke she spent quite awhile in the hospital and then to a step down unit that i spent enough time to watch - observe and be part of bathing her and changing her and seeing products they used or why they switched to a different product etc. it was during that time that I learned the most. Then while she slept I watched every video - read other families stories.
I don’t think healthcare understands the very different levels and very different needs of each family - each patient.
I am still overwhelmed but with a little more balance but I feel sick inside seeing others going through the moments your describing when you feel like you were thrown to the wolves. I wish I could get in my car - drive to your house and help you. Help you find a better way to bathe - change and help you choose the correct products that will allow you to do so in the best way for your mom - to make it easier on her and you.
I am not sure if I have all the information on your moms needs and will re-read to see if I have any other suggestions but I just want you to know I SEE you and I hear you and validate what your feeling.
if mom is bed ridden there is an external pump (covered my Medicare) that you can look up that collects urine from someone in bed - nothing evasive at all and worth a try as it will keep her skin dry and help collect much of the urine and make clean up a lot easier and cleaner. It’s called the purewick by liberator medical. The pump and wicks are covered on Medicare just this year. You can also ask to be supplied with overnight pads that are like a maxi pad that you insert in the depends for additional absorption so the depend isn’t so soiled.
I would also as some have stated look into calling another hospice provider as well as social worker - I know they will not provide the amount of help we all need but you do need one that is better equipped to provide for your moms needs and can help you find additional local support. Praying for you to find people who can help you and support you better so that you can give mom what she deserves.
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It sounds like you perhaps misunderstood what exactly hospice does for someone in the home under their care, which in reality isn't much.
My husband was under their care in our home for the last 22 months of his life, and he was also completely bedridden. The nurse came once a week to start, and the aides came twice a week to bathe my husband, which left 99% of his care to me. Believe it or not that is quite normal for hospice.
I had to hire an aide to come every morning to put my husband on the bedside commode so he could poop, and I was fortunate that he had a permanent catheter, so I didn't have to worry about that.
They did however answer my calls(except during Covid, then in the evening it went to call center)day or night when needed. You may want to see if there is a better hospice agency in your area(one that will at least answer your calls)as you can change agencies any time you like, if the one you have isn't do their job properly.
And of course if it gets to be too much for you and your family, both can be placed in the appropriate facilities, and you can apply for Medicaid for them if needed. Wishing you all the best.
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gdaughter Jun 12, 2021
Thanks funkyg...I did look up a bit re hospice, and I find it very disappointing. It looks like we may be following in your foot steps, however, considering the savings of someone being home and not in a facility, I expect more, rightly or wrongly. Seems from what I read the order has to come FROM hospice or it will not be covered, so perhaps the additional help/aide can be covered. It's a shame they can't do more as I think it is really misleading to some extent. We are using the longest established, most highly reputable hospice service in town, but I also learned as you said we can switch. Thus far most of the people have been terrific. One friend suggested making clear we don't need a social worker (especially as I am one) but I know they have their policies, procedures and roles, so I am not keen on doing that. However, the fact that the nurse who stopped today said she would "fight"for getting the bed rail pads (so mom won't put her feet through is ENOUGH. I will appeal and raise some hell to get those and I don't think we should have to pay for them. We have come this far and although I recognize our limitations, I do hate for mom to wind up in a facility, all the stress of finding a decent one and visiting in the time of covid, will be on me, dad is clueless of the implications.
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I hear your desperation. Caring for 2 very elderly parents IMO is too much to handle esp when one of them needs hands-on 24x7 bed care. I haven’t posted here before and it’s likely that more seasoned commenters will give you better advice than mine. But I have my dad in hospice in an AFH right now. He’s been there for months and he’s completely bedridden and requires maximum care. We applied for Medicaid because my parents have few assets besides their home. Mom pays about 20% of his cost each month, Medicaid pays the rest.

The way it began was I got him into the hospital when I realized we weren’t going to be able to keep up with all the care he needs. Once in the hospital I dug my heels in and kept insisting they keep him until we found him a long term care facility. To get him into the hospital I didnt lie to his primary, I thought he might have a uti and the primary said take him to ER. When the hospital said he was negative, his primary told them what I told him, that there was no one at home able to give him the kind of constant care he needed and that the hospital should release him into an appropriate facility. We worked the financial stuff with hospital social workers and dad stayed in the hospital for almost 10 weeks before finding this AFH. It is a lot of work but in our case we are glad we can visit him as family and bring mom plus we can focus our caregiving on mom because she needs a lot of help even though she’s still mobile and able to take care of herself for the most part. Still, I am at her home 3 days a week minimum, taking her to doc appts, helping her with a myriad of other tasks, taking her to visit dad, etc.

I hope something I wrote might help you in thinking through possible solutions for your situation. It’s so hard to see our parents go through something like this.
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NeedHelpWithMom Jun 12, 2021
Welcome to the forum!

Everything you said is great advice! My uncle who lived alone in his 90’s with Parkinson’s disease. He did get a UTI. He developed sepsis and nearly died.

My cousins work full time. My uncle told his daughter that he would hire someone 24/7 to stay with him. His daughter’s response was, “Dad, you can’t afford that. 24/7 care is a nursing home.”

A nursing home was the best thing that ever happened to him. He lived to be 96. His children visited him weekly and he adjusted well.

You made the right decision for your dad.
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Gdaughter, this may sound awful, but your mom belongs in a situation where there is trained 24/7 care, either a hospice facility or a skilled nursing facility with hospice services as an add on. You can choose to sit at her side and advocate for her needs. But I don't see you being successful at home. She is a difficult patient who needs more than your care at home.
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NeedHelpWithMom Jun 11, 2021
It doesn’t sound awful at all. It sounds realistic. The awful part is trying to manage an unmanageable situation. I remember those days all too well. I wouldn’t recommend it to anyone! A hospice house or a nursing home is a blessing and a relief for all concerned.

Overseeing my mom’s care and visiting without the burden of the ‘hands on’ caring is truly the best solution. The care and concern that was expressed for our entire family was absolutely phenomenal. I have never met such warm and compassionate people as my mom’s hospice team. It is a complete team, with a social worker, caregivers, nurses and clergy.
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What a terribly sad situation. I am so sorry that you are struggling with these difficult challenges.

I wouldn’t ask for a different social worker with your hospice organization.

Hospice organizations aren’t all the same. Some offer more services than others.

I would thoroughly research all hospice organizations in your community and select the best fit for your needs to use. While looking at the different options, inquire with the organizations if there is an ‘end of life’ hospice house available for your parents to go to. Ask what the requirements are to enter the hospice house.

My mom was on hospice towards the end of her life and she spent her final month of life in a wonderful hospice house. She received excellent round the clock care. She died at age 95 in April with dignity and free from pain. She had Parkinson’s disease. I miss her very much but I am glad that she is at peace. She was ready to join my father in the afterlife.

I cared for my mom and dad for many years. After my dad died mom lived with us for 15 years. I truly understand how much time, love and energy that you have devoted to caring for your parents.

I do not know your particular circumstances or what your desires are regarding your parents care, but have you considered a nursing home for them if safety becomes an issue or if you feel that you just can’t keep up doing the hands on care? You can use hospice in a nursing home also.

I hope that you are able to find a viable solution soon.
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gdaughter Jun 12, 2021
I am familiar with various hospice programs, this is one my mother volunteered with for many years (in their resale shop), and yes they do have a hospice house but it is restricted to very limited circumstances. Your comment about a nursing home for both of my parents is totally off the wall as well meaning as I know it was meant. WHile 104, my father is an extremely active, involved and capable person. HE mows the lawn at least 2 times a week, keeps an eye on mom, fixes something for their dinner usually (I make stuff 1-2 x a week usually, but he is so demanding and wants to eat earlier when I am typically working remotely till 5). HE walks in the neighborhood, in the mall if the weather is not nice, talks to and has relationships with the neighbors. To put him in a nursing home or any facility would be the death of him and grossly inappropriate. For now we will find a way to manage. thank you, and my condolences on the loss of your parents. Obviously they were lucky to have you in their corner.....
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Medicare does not pay for additional aides. They pay for the one sent to do bathing. I know someone mentioned on here the Hospice they used gave an aide for more than just bathing.
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gdaughter Jun 12, 2021
I'm investigating this further. I think with appropriate orders there is a possibility it might be covered.
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You can fire them and use a different hospice provider.

I think that this forum has made it very clear that hospice does not provide the day to day care and that the family is responsible for 99.9% of the actual care. So sorry that you missed that.

Medicare might pay for some HH, never hurts to ask.
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gdaughter Jun 12, 2021
As I said prior while I appreciate this forum it is not always accurate for every state or situation, so I take what is shared with a grain of salt, so to speak. People do not always read what is relevant until they are in the midst of needing whatever. ANd personally, knowing the long-standing reputation of our hospice program I expected better. However much is good about it and for now we will try to make it work. I will be investigating further re medicare and what they cover and what is required to get it.
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