Hospice care for dementia patient?

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Hospice care for dementia patient?

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Dad has relatively advanced dementia and has been in a memory care assisted living facility for 2 years. He has declined in the last 6 months but is still ambulatory and able to eat on his own. He is dropping weight and has become fully incontinent. He eats a lot but is stick skinny. Today I spoke with the head nurse and she says that due to the weight loss and incontinence, she is recommending a consultation with a Hospice nurse. She says this does not mean he is at end stage, but hospice could step in and provide additional care at dad's current facility. I have no experience with Hospice. Any thoughts on what to expect and what this means??

Alzheimer's & Dementia Hospice Severe Dementia

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Friends who have used hospice have very positive experiences and comments. It is a wonderful aid to your loved one as they near the end of their life. Additionally, they can help you understand everything going one. A bonus: medicare pays for it.
I'm planning on using it when my husband needs it.

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We were living in an Independent Living facility when my husband had a stroke and went to hospital. After a week, it was clear that he could not swallow, so hospice was recommended. The independent facility was okay with that, but our small apartment didn't have room for hospital bed--since he wasn't likely to live but a few weeks, we decided on a free-standing hospice, where the care was absolutely amazing--and someone was there if you needed anything. My understanding is that if you do in home or other facility the hospice team only comes a few times a week. But it doesn't cost anything if it is not a hospice facility, and the facility will charge room and board (although we didn't really have any board).

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I am the original poster, and thanks everyone for the responses! We met with the Hospice nurse this morning and she was great. Based on her evaluation of my dad, he is not eligible for Hospice care at this time. It's because he is still ambulatory without a walker. He walks with a cane but shuffles along. Nurse says he will be re-evaluated in a month and we'll go from there. She built a file for him and they will be available for help if his condition deteriorates.

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Between now and when he is reevaluated you should document EVERY little decline he has.
Sleeping more
Shuffling more
Unsteady
Talking less
Needing more help to eat
Needing to be encouraged to eat
Needing his food cut, or further processed
If any of this things happens at any time in the next month is should be documented
If you notice ANY change at all document it.
Any and all changes will help in the reevaluation.

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Hospice is the best- they are there to help the patient but also the family. My step son felt his dad was in pain 3 days before his death- hospice told him that there was no longer pain and that the medication was working. That the moaning was his dad singing and the reaching was his dad's way of trying to get to heaven!

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My mom has been on hospice now for almost a year as she has advanced Parkinson's disease. They pay for all of her meds that are related to her disease. They order them for her and deliver them to the memory care facility where she lives. She gets all the depends she needs along with the wipes and gloves and has a hospital bed and wheelchair paid for by hospice. When I had asked her doctor about putting her on hospice he was in agreement and wrote up the order. I then spoke with the facility where she lives and asked them to recommend the top 3 hospice companies that other residents at the facility use. I then called all 3 and narrowed it down to 2. I set up meetings with the 2 companies and asked that they send the nurse and social worker who would be seeing my mom on these interviews. I had a list of questions that I asked each company which included what extra services they provide such as music therapy as not all companies provide the same additional services. I watched how these people interacted with my mom as I felt it was real important for my mom to click with the people who she would be spending time with.
Both companies were great but my gut told me which one would be best for my mom. We went with Silverado hospice and after a few months in when the facility where she was living could no longer care for her we moved her to Silverado memory care. Silverado hospice has an office at the facility where my mom lives so it is so convenient for them to see my mom when there are are any concerns. I highly recommend using a hospice company affiliated with the facility where a loved one lives as they work together well and you get more visits as a result. The hospice nurse and social worker give me updates on my mom when I go visit her and call me if anything comes up that I need to be aware of. So happy with the decision to go with hospice. Remember that if you are not happy with the hospice you choose you can change companies. Hospice is paid through Medicare and costs you nothing. I can't think of any reason why not to use hospice when the time comes that a professional tells you it is needed.
Good luck.

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Your father now fits the requirements for Hospice - say thank you because he will be getting extra care. Hospice will clean him and shave him and make sure he has no pressure sores.

Do not be afraid to accept Hospice for him. I asked in February for my DH but he didn't meet the requirements - they only showed up in May, 3 days before he passed. But even that was a blessing.

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I experienced Hospice Care with my mother and mother in law. It was wonderful! They gave advice on any question I had. They treated the patient with love and respect. They worked together with nursing home and assisted living facilities. I considered them a godsend.

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My mother died of Alzheimers last April while in a nursing home. We were told by them if we wanted to use Hospice, we had to use the one they had a contract with. This ticked me off a bit but I went along with it. It turned out to be a blessing. They personally knew all the administrators and nurses and were able to get things done that I could not. For instance, they had my mother in a bed that would not raise up due to being broken. I had asked for another one but it never happened. When Hospice came in, they got her one that worked immediately. They took over her bathing and she no longer was in tears after it was over. Someone from Hospice saw her everyday. I thought Hospice was wonderful and I had a direct line to someone at all times. Don't listen to these people who are naysayers, try it and if you aren't satisfied you can stop it.

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I had an positive experience with Hospice. The head nurse at dad’s CBRF/memory care was so in tune with dad’s health she knew something wasn’t right. Fast forward to a prostate cancer reoccurrence and qualifying for hospice.
He was under hospice care for 14 months. This organization provided everything. The social worker would spend time with me and call afterwards. The same as the chaplain who got dad to obtain the final rights.
He had a nurse practitioner who recertified him as well as saw him quite a bit the last month almost daily with the nurse.
A couple of the staff came to dad’s memorial service and now 6 months after his passing I still receive calls from their grief counselors.
Ask around for recommendations for hospice.

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My Husband died 2 years ago. He had been diagnosed with Alzheimer's 12 years prior to that.
He fell and broke his hip and after he got home from rehab, and he had done very well there, I stopped by the Hospice facility in our area and talked to them about how would I know when he would be eligible for Hospice. After talking to me they said it sounded like he was already eligible. So, condensing....he was on Hospice for almost 3 years! I would not have been able to do for him what I did without having Hospice there to help him, help me both with equipment and supplies but the emotional and educational help that they gave was unprecedented.
So needless to say I am a big proponent of Hospice.
they will give more help to your Dad. There will be a CNA that will come in and bathe and dress him a few times a week. (likely the facility where he is will no longer bathe/shower him if Hospice is doing that) there will be a Nurse that will come in and check on him once a week.
the phone call, the consultation will not cost anything but time. (ask if you can be there when he is evaluated)
Talking to the person that is evaluating him and after getting all the information you want if you decide that you do not want your Dad on Hospice you can say no.
After getting on Hospice if you decide that you no longer want him on Hospice you can drop it.
And if there is more than one Hospice Organization in your area you can contact each one and "interview" them just like you would any Doctor. Some Hospice are Not for Profit and some are For Profit. It just so happened that the Hospice I chose was/is Not for Profit. I do not know if that really made a big difference but I think it does.
Bottom line...I think Hospice is wonderful

Oh, side note along with CNA for bathing and dressing and the Nurse there will also be assigned a Social Worker that can help with many things, you also have the option to have music therapists come in, there is art therapy, a Chaplain if you so wish, and Volunteers that will come and spend time with him if you want to take advantage of that.

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I'm sorry about your dad. I wish I would have known about hospice when my mother was in a MC facility. Your father will have to be assessed to make sure that hospice is appropriate. For your father, death will need to be close-at-hand for hospice to step in, at least that's what I've been told by the facility my mother is currently living. Hospice will provide another layer of care and help you in making important decisions for your father's end-of-life care. I used to think hospice was a separate building where people go to die. Not so. Hospice if a team of caring folks who want our loved ones to move on to their next live in comfort, love and dignity. If your father is eligible for hospice, I would not think twice about placing your father under their care. Bless you.

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Our experience with Hospice about a year ago with our loved one was a very positive one.
Dad wanted to be at home where he felt most comfortable when he passed and the individuals who provided compassionate care allowed us to do that and give him the dignity he deserved.
Everyday CNA’s came and provided care - we wanted to aid as much as possible and the team of people who were assigned to Dad’s case were amazingly supportive and allowed us to assist when possible and gave thorough instruction in how to do what he needed to keep him comfortable.
Supplies were provided, physical care given but for us, the counseling and spiritual support offered was so comforting during one of the most difficult experiences for our family.

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VITAS hospice tends to be skimpy with supplies, but that's how they all are. I still have to buy supplies to supplement what they give me. They give me 20 diapers a week..no more. So I have to buy additional diapers. My mom can use 4 of them a day. They give me wipes, but only in small containers so I end up having to buy my own. I use gloves like crazy. They give me a box of gloves of 100 every few weeks so I end up buying my own. When I asked for "thick it" they give me this tiny bottle, so I end up having to buy it. They will give you a hospital bed, but it's not a great one..still being able to control the head of the bed up is helpful. The nurse is not always predictable when they come over, and though they have CNAs, they only stay a little bit to do bathing or to "help straighten up" ..but I bathe my own mom because I want to make sure it's done properly. What really was a sticker shock -- Medicare was billed $5,000 for just a few months service. that's a lot of money they charged government for just delivering a few supplies. I don't think they help that much, but a little bit is better than nothing. I stay with pallitaive care, which they is Hospice, because it's getting too difficult to take my mom to the doctor. when she is sick it's impossible to move her and they phone me in some antibiotics. Otherwise I'd call 911 and off to the Emergency Room and they do the same thing. Her routine meds the doctor orders without having to see a doctor's office. That also helps. They also provide volunteer sitters..but keep in mind they are volunteers so you don't know what you are allowing in your home. I always fear they may claim to get injured in my house so they can sue me. So I don't use them either.

If your loved one becomes incontinent and unable to care for themselves, they usually end up in a nursing home. Or you can take them home and do it yourself like I do--and I do not recommend that since you will end up neglecting your own care because caring for someone that old and feeble is truly a full time job so it's a major hardship to even to go to a doctor's appointment.

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Cetude, people that have the hearts to do volunteer hospice work are not likely to look through your medicine cabinet or steal anything. It is emotional work and they care about fellow human beings and that is why the volunteer.

I volunteer and I have to have background checks and fingerprint clearance, training, etc. They do not just send people out, they are liable for any injuries or allegations of wrongdoing. They take great care in selecting volunteers, as not all that volunteer are accepted.

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Hospice is great! The hospice org. that is involved in my wife's care is a non-profit. I would check to see if there are any non-profit Hospices in your area.. Hospice does not only provide end of life care but also palliative care for those who have chronic illnesses that will lead to death at some time.

The nurse comes to see my wife at least once a week. The aide from Hospice does the CNA's part 2 times a week.(shower, change bed, clean room, ) Also a mental health specialist checks on her about every 3 weeks. She also provides me with some counseling during each visit. If she misses me at the facility we have a phone session. ( I spend 3 to 6 hours a day with my wife, then I pick our 16 yo son up from school and try to keep his life normal).

I highly recommend Hospice.

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I have had great experience with Hospice. As previously mentioned supplies like depends and wipes, lotions, hospital bed,oxygen,etc. will be free. The diaper rash cream Hospice supplies is the best stuff I have ever used! My hospice agency even supplies Boost products like pudding and juice which are perfect supplements for his weight loss. Depending on your needs they have Spiritual councilors and social workers and of course nurses and aides. I love and appreciate working with our local Hospice agency.

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yeah but they don't give you much. I only get 20 diapers a week..sometimes the nurse forgets to bring them so their supplies are only supplementing. and I don't even get to see the nurse every week--the visits are not predictable. the aides don't do much so I don't even bother using them. it's another person to wait up for.

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My mom has dementia but it's fairly mild at this point
Our doctor recommended hospice care even though my mom isn't terminal. She lives at home with me. We have a nurse that comes once a week and a CNA three times a week to bathe her. My mom is wheelchair bound and stays on the couch most of the time. Hospice also provides us with adult diapers and wipes, lotion and body wash. They'll provide any medical equipment we need. I hope what I posted helps you.

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Thank you for your responses. I am an only child and have limited help in this situation, so I am very grateful for any additional support I can receive! The nurse at Dad's facility did say Hospice might help with supplies & meds. Mostly I look forward to having someone else check in on him and be a source of information for me.

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I believe you will definitely get what you are looking for then. The advantage is that most hospice is covered by Medicare and most AL (not sure about memory care) is not. My experience with hospice was that they helped us understand what to expect from the process of dying, which can be long or short. This allowed us to be better prepared and make more informed, and I think better,decisions. Wishing you strength and peace for the road ahead.

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I would allow Hospice to evaluate. As said, a nurse will check on him 2 or 3 times a week. They also provide an aide. They take care of meds and provide Depends. If Dad is private pay I would take advantage of everything the do. This should decrease the cost of Dads care at the facility.

It was recently mentioned that some ALs feel its OK to use the Depends supplied to a hospice resident to use on other residents. Not so. Previous posters have suggested only leaving enough for the hospice residents use. Keep the balance in your car.

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Upstream, my Mom was on Hospice at her nursing home because it was thought she could end her journey in six months or less.

It was a RN stopping by once or twice a week to check Mom's vitals, an extra set of eyes to see how she is doing. A volunteer would stop by to chat with Mom, but in my Mom's case, Mom's dementia was so far gone that Mom wasn't able to communicate or even understand what the volunteer was saying. Hospice also could call in a religious person to say prayers. Hospice also ordered oxygen.

Hospice also knew that within 48 hours my Mom could possibly be passing. Thus, enough time for me to arrange to stay with Mom that final night.

My Dad lived in Assisted Living/Memory Care. One day we had to call 911 as Dad wasn't feeling very well. Turned out he had pneumonia, but this time it was "aspiration pneumonia". The hospital recommended Hospice.

Hospice ordered a hospital bed and an oxygen tank for Dad. Dad passed quite quickly from the pneumonia, within a week. I knew Dad wanted to be with my Mom who had passed the prior year as they had been married for close to 75 years. Dad did rally one day, which is normal, then the next day went back into his peaceful sleep.

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