Follow
Share

My mom is 91 years old. Up until 3 months ago she was doing great, able to live on her own. Had a fall and was found by me after being down over night. She had alot of protiens built up in her muscles from the fall and started having kidney function failure. She now lives with me in my home.
She isn't at all the same mom I knew and loved 3 months ago. She was diagnosed with a severe dementia decline and they are now sending out a social worker to start paperwork for Hospice. I am willing to try anything? I am exhausted, sleep deprived and stir crazy. What experiences have you all had with Hospice. What should I expect from them?

This question has been closed for answers. Ask a New Question.

27 Answers

Most
Helpful Newest
First Oldest
First
I too have hospice my mom is in a care home with dementia they come out in the afternoon and really don't do anything I have had the same experience with hospice they don't do anything for us if I bring mom back home I will be on my own make sure you get the facts straight before you sign her on
Helpful Answer (0)
Report
Getting my mom onto Hospice care was by far the best gift I ever gave her! My only regret was not getting her signed up for hospice sooner - I was ignorant that she had options to be on hospice longer than a month or so. She went from getting minimal care in a nursing home (despite her advanced dementia) to having a whole team of caring professionals at her disposal. Not only did they allow her to die with dignity, the help they offered me and my brother was just invaluable.
Helpful Answer (1)
Report
My 98 has been with hospice for years. Her conjestive heart failure diagnosis is how she qualifies. She lives independently, is taken to a senior/nutrition center 5 days a week. This is a city sponsored program where she is fed lunch and can interact with folks in her community. Hospice has been her life support and my relief as they order and dispense her meds. She has no dementia (can you imagine) so she take her own meds. They arrive to bathe her and monitor her health. My 85 yr old mom, on the other hand, did not qualify even thought she has early dementia and stage 4 kidney failure. So it's important to call hospice and explore what, if anything, they could do for your loved one. They come to you and the application process is quick. We too have changed agencies when the first one changed ownership.
Helpful Answer (0)
Report
Hospice Care is great....they will come in and give you all the respite help that you need. ICC ( They also offer Intensive Compassionate Care) ask about that .
Just allow them to asses your situation and you will be surprise at how much they can help.
Read a little about the joys of hospice at
dementialiving

Thank you, I hope this will help you
Apharris
Helpful Answer (0)
Report
I am a caregiver for my dementia mother and she just had a massive heart attack last year and I am still taking care of her, I have called hospice for her needs like her meds is deliver at home through mail and oxygen when needed. Her nurse comes once a week and a doctor come and see her every two months. I have been bathing her and checking her vital and giving her meds that she suppose to have and feed her daily. A social helper stops by and ask if I need anything or need someone to watch my mother so that I can get a break,Hospice is really great to have for home care.....and I don't have any complain about them. I do recommend anyone to consider getting help from them for your love one it is worth it ..I am giving my mother her respect and and her wish that she wants is to never let her go to a nursing home...she is happier with her own enviroment .I am proud to be her caregiver and love her till the end of time.
Helpful Answer (0)
Report
Hospice is like home health care, more or less, but with more care. Their premise is
generally that this person has a good chance of passing away within 6 months. They give what they call comfort care. They will have drugs you can give her if she is having pain or anxiety. They do require that the person on hospice has a DNR.
They will have chaplains that visit regularly. Kind of like friends to talk to. The nurse generally will come once a week, depending upon their condition it might be
more. If your mother gets sick she no longer goes to the doctor, the nurse will come examine her and report to the doctor and order her whatever medicine she needs. They will send in an aide to help with bathing. My mother gets one that comes in M,W, and F. They just make it easier. They also provide some medicines, it is usually for whatever condition that made her eligible for hospice. My mothers for example is COPD. They provide her inhalers.
Helpful Answer (0)
Report
So far I have had great results with Hospice...no complaints at all. Mom however hates having the interuptions. But she puts on a big smile for whom ever comes in the door. Whether she wants them there or not. The days of seeing little bits of my mom are gone. She hasn't any clue to who I am or where she lives. She woke up on the grumpy side today...and maybe my emotions got the best of me. But I wanted to see just a little bit of my momma. Tomorrow is my twin sister and mines 49th birthday. My only wish is to see my mom in those brown eyes one more time. If only for a day...sorry for the sobbing. I just miss her. The person that's there now...is not her. It's been a tough weekend...hoping for a better day tomorrow. Night all.
Helpful Answer (0)
Report
Hospice has it's place but I would say be careful because the ones that I've had experience with tend to medicate heavily. Make sure you stay in control and question all treatments. It's important for you to get a break frequently so I hope it works out for you. I wish you the best.
Helpful Answer (1)
Report
I have Compassion Care Hospice for my 98 yr old grandmother in our home and I love them. I had another hospice group before and saw a huge decline with grandma, but with med adjustments from the new team I have more quality time with her and she is not as sedated. Respite was a complete fail for us with the other hospice group and I have been scared to try it with CCH. One thing to ask if there is a respite care facility that they can contract with where ever you are traveling to if you go away for 5 days. That way you can check-in on your loved one. One thing about respite/NH if you come around they stay on there toes with your loved ones.
Helpful Answer (0)
Report
I have Compassion Care Hospice for my 98 yr old grandmother in our home and I love them. I had another hospice group before and saw a huge decline with grandma, but with med adjustments from the new team I have more quality time with her and she is not as sedated. Respite was a complete fail for us with the other hospice group and I have been scared to try it with CCH. One thing to ask if there is a respite care facility that they can contract with where ever you are traveling to if you go away for 5 days. That way you can check-in on your loved one. One thing about respite/NH if you come around they stay on there toes with your loved ones.
Helpful Answer (0)
Report
Thank you all so very much. I am going to set up an appointment for Wednesday. Mom has had such a fast decline on the dementia that I would definately appreciate what ever help they can give. I have had no more than 3 hours of sleep in a row. Mom gets up every hour of the night (I long for a wonderful night of 6 to 8 hours of sleep.) needless to say I am at my whits end. I love my mom so much I hate seeing this happen to her. She has good days, smiling and talking a little. But alot of the times she walks around groaning and grunting, and delusional. She doesn't know any of us anymore. And she calls my husband "that man"...not sure why? One day she told my brother that my husband left me. Then the other day she said that she heard that he had died? Sometimes I sit in front of her and ask her if she knows me? or where she is? and we go through the whole story of why she is living with me. I show her pictures of family members and try to jog her memory..to no avail. Thank you for your stories and insight. I want my mom to be safe and comfortable. So what ever Hospice can do to help me ...I will welcome it.
Helpful Answer (1)
Report
Dementia is a terminal illness and when it gets to a certain stage Hospice can help, has to be recommended by primary care doctor. They don't stay on Hospice if they get better, some times hospice can help them improve. Hospice is there for the care giver, family and the patient. I'm a caregiver and work with dementia patients, the whole body begins to shut down in the last stage. Hospice is there for comfort.
Helpful Answer (2)
Report
My mom is in hospice now under "dietary decline". She is not eating as many solids as she was and losing weight. The hospice nurse told me patients are not usually accepted if they can walk, talk and are continent which my mom is. I am confused about most of it because my mom was released in July from hospice because she was eating solids again. I was told that she should have never been released just because she is severe but not end stage. The operative word is "comfort". They do not try to make one " better" only to make koe comfortable with little or no meds related to getting better. They administer pain meds. That is about all I know for now. Very confusing.
Helpful Answer (0)
Report
Hospice is comfort care....they are verry helpful......as long as your mom needs their service they are usually very equipt and knowledgable about the situation. They also help you to cope....by giving you the necessary information about any services that is available to you and your mother as you go through this time. I have worked with hospice and I am aware of their effectiveness!!
Helpful Answer (1)
Report
My father-in law had hospice and it was wonderful. Gave mom a great to do what she had to do and take a breather. They will do what you want them to do. Some will do laundry. They want you to enjoy the last days,months with your loved one. Some will order patients medicine just be there for you. The lady that mom had would give dad a sponge bath. For your piece of mind I would try one. Goodluck and God Bless.
Helpful Answer (1)
Report
I am so happy that you had so many wonderful years with your mom. Dementia is very difficult and my mother in law struggled for almost 8 years.
I don't know how to say this tactfully but Hospice is not normally called in until the end. It is the most wonderful gift in the world. Medicare and Medicaid will only pay for 6 months of service but I learned to appreciate each and every day and not focus on the end. I have a belief system that allows me to acknowledge that the time on earth is just time that we are preparing for something that is so much better.
Mom had brief moments of recollection and I lived for those times. She was dangerous to herself and others with her illness and she had to be in a nursing home but we were there with her all the time and still brought her home for holidays and birthdays and family events.
We were able in the end to bring her home and she died here in her tv room with my laying in bed with her and praying and singing "Amazing Grace". My objective was to make her life happy and I didn't want her to be afraid. She knew she was home. I had a nurse every day to help me. Because of her size and she could no longer move on her own, I needed help.
Mom had left us her house but we were in the process of fixing 20 plus years of disrepair to sell the home to pay for nursing home expenses. She always knew she was home in the end even though prior to that at visits, she was really unaware. She was able to tell us things that we never expected she would ever remember. She was so grateful to be home.
The nurses would stay an hour or two and in the end...they would stay overnight. They trained me on how to give her medication and kept me involved in what to look for. I always had an emergency number and there was a professional only a phone call away. I couldn't control the illness but I could make sure she didn't have pain and she was comfortable in her environment. They also had a minister who would come and visit us. I have a son in college and a 15 year old who I was worried wouldn't handle this well. They both thought it was the best thing and was happy to make her life as wonderful as she had done for us for years.
Do you have a local church? If not call your local Services for the Aging. Also, through the hospital, try to get a case worker who can help you with some of these things.
Hospice will also have a respite service...depending on which one you go with.
If you need any more information, please let me know. This time was so difficult for us but I was so grateful to have that time. When she passed, we had told her it was time and she wasn't afraid....and we weren't either. She died the day after Thanksgiving and even though the day before and the day after Thanksgiving she couldn't move or communicate. She woke up Thanksgiving morning to the smell of the season and she was her old self trying to help me cook and willing to do dishes if I could help get her out of bed. God gave us our last Thanksgiving together. God Bless!
Helpful Answer (3)
Report
The place they take my mother keeps to her same schedule. It take about 3 hours to drop her off because they want to know everything and then some... when she likes to wake up, what she likes to eat, medicines, does she like to nap and when
she likes to go to bed. They write it all down. They make her feel so welcome, and I guess since they keep her on her schedule and don't make her follow another it works out well. She has moderate alzheimer's. Of course the nursing home that our hospice uses is one of the top rated in our area. I also have a friend that use to check out nursing homes for the state, and he says this is one of the best. So I guess we are extremely lucky. My Aunt who is 92 is also there full time as well as one of her old friends. You can also ask for the social worker to give you names of health care providers that come to the home, but you usually have to pay privately. I guess it would depend on your financial circumstances. The ones down here usually get $10 to $17 dollars per hour. As far as a fall or infection having done this since 2009, it could happen anywhere, including the home. I have been taking care of my mother and father who both are on hospice, and my aunt who is now in the nursing home. No matter how much care you give them, those things just happen.
Helpful Answer (0)
Report
PS I was also told about the 5 day respite but its only in a NH and a change of environment is devastating for dementia patients, or anyone really. And what if they fell there or got an infection? Doesnt seem worth it to me. Now, give me home care and I would love it! lol Too bad we all didnt live near eachother so we could rotate helping eachother!!
Helpful Answer (0)
Report
I have had great luck with hospice, but I think just like everything....check them out.
Try to find reviews of the one you are thinking of online. Interview them and ask to
speak to current or past clients of their's. There are good agencies and bad. Ask your doctor to recommend one. If you get on hospice, they have what is called Respite care. They take your loved one to an approved care facility for 5 days so that you can take a trip, or just get some rest and alone time. You can ask for this once a month if you need it. Or at least this is the way it works in Texas. I hope you get the help you need. It is so overwhelming to be in your position.
Helpful Answer (1)
Report
I think you are all lucky to have Hospice care like that. I had bad experiences with them and stopped them. My Mom is also 91 severe dementia, and lives in my home. They came 3 mornings and said Mom was too difficult a case without two LNA's and the girl hurt her back rolling her so, they can send someone for an hour in the late afternoons possibly. Well, I need help getting Mom out of bed, not in the afternoon when she is all bathed, fed, and napping until supper.The diapers and chux pads were thin/ cheap, and didnt stop the urine, not worth using unless you put them over good quality ones that you buy. The only good thing I got was an extra hoyer sling but they picked it up the very next day that I canceled them.You dont need them for medical equipment. I got a hoyer lift, free sling and hospital bed prescriptions from Moms doctor and called a medicare authorized pharmacy and they delivered what I needed free. As for mornings, I hired my part time CNA for every morning now and I do the rest . Mom doesnt walk or talk, she is heavy and strong but her brain doesnt tell her how to walk or roll any more, and she resists. I cant get her up alone and thats all I wanted from Hospice, they didnt pull through for me. I could tell you more about them and others who werent happy either. They call and the nurse drops by weekly, the social worker and chaplin call, etc, and to be honest, I am too busy to be talking on the phone and having drop-by's. When Mom has her music/nap time I have 1-2 hours to get my housework done and really dont need or want company. Please know that when You sign on for Hospice you can no longer call the ambulance if you need one. You have to call Hospice for everything, including illnesses, dont go to the doctor OR you will pay out of pocket. I am so happy there are good agencies out there but for me, they didnt help at all. Best of Luck to you, a fall is devastating but they can recover, my Mom has 4 pins in her hip and she recovered years ago, it took PT at home, and lots of good food, music and love.
Helpful Answer (3)
Report
Your mom does not have to be dying to receive hospice care we use Season's hospice in miami. They have helped her for 8 months and still bathe her everyday. Call hospice in your area and they will give you info. Good Luck I am so happy with them if hadn't been for a firend telling me about them I would have been a basket case.
Helpful Answer (2)
Report
My mom is 86 y.o. and in a long term care facility. She had fell and broke her hip and was not able to do rehabilitation due to her dementia. Now, in long term care, her eating declined to about 25%, so her doctor there suggested hospice. This is in addition to the nursing staff at the nursing home. Hospice does help, but it is limited. A CNA nurse comes out 5 days a week in the a.m. to feed her, bed bathe her, and dress her. The nurse is there about an hour. Also, a RN checks on her weekly, as well as, a social worker and a chaplain visits her weekly. I call them if I have any problems, questions, or need anything for my mom. They provided a "gheri chair" for my mom at the nursing home because the home was placing her in a wheelchair to sit all day because she is risk at getting out of bed. The gheri chair is like a recliner, so at least now when they put her in the dayroom all day, her head isn't bobbling from no support.

A hospice social worker calls and checks in biweekly also.

If they come to your home, it was my understanding it will be about the same. So, they won't be there for long periods of time.
Helpful Answer (1)
Report
I have been told that hospice will help with ur Mom's every need, certain meds, equipment, hygiene needs, etc. My mom, with end stage vascular dementia, was recently eval'd for hospice and was turned down for now bc she says more than 6 words/day. They told me that was Medicare rule. I believe that if ur mom qualifies, you cannot go wrong. Besides, if the group that u sign up with doesn't work out, u can fire them and get another agency that is Medicare certified.
Best wishes! I know how u feel....
Helpful Answer (2)
Report
Hi, after my mom fell and hit her head and broke her arm; we had to put her in a nursing/rehab center. Mom had alz & parkinsons and had lost a lot of weight. So the weight of the cast really unbalanced her, that is why she had to go to rehab. They were fantastic, loving and treated her like she was their mom, They gave her hugs and held her hand. With as advanced as my mom was, the head hit just snowballed her illness. She stopped walking, soon after she stopped chewing and 3 weeks after entering hospice she passed away with all of her family near. The nurses kept coming in to see how she was ... not to see if she was dead yet. They wanted to make her comfortable and help us out anyway possible. We could not have done it at home with the grace & dignity they gave my mom. Also thre was a nurse that resembled my and mom thought it was me ; so mom thought I was there every day. I lived 200 miles away and worked so I was up on the weekends. My dad cared for my mom from diagnosis at 60yr until her heath at 73 yrs. Bless them both. I would use Hospice again if i had to. Best wishes & big hugs!
Helpful Answer (3)
Report
Msdaizy, I've heard so much good about n only 2 things EVER that were not so good. Both about same particular agency-others chimed to report concerns and change to a diff hospice. Steff, hospice provides palliative care as well, to those who have life-limiting illnesses, not just cancer. In the district, u may have choice of several providers in md, va, n dc. Check for reviews n visit local n national hospice sites-wealth of info on them. Also contact area on aging agency for your locale. They can advise of programs in your area for respite services, volunteer visiting programs, funding for day programming, n other helpful resources. I hope you both find some help and relief, it's hard isn't it? Stick around the AC site-it has helped me so much. Best of luck, let us know how it's going. Kimbee
Helpful Answer (2)
Report
What constitutes receiving hospice services for an 89 year old mid stage Alzheimers patient receiving medicare? I've been the sole caregiver for my mother for two years. Although, watching my mom decline is like grieving, I thought you have to be dying to receive hospice help? What is the definition of dying for a Alzheimers patient and is hospice help something my mother could be eligible for?
Helpful Answer (6)
Report
My mom has alzheimer's and had a terrible case of bronchitis my friend told me to call hospice I did they saved my mom's life. For the first week they had nurses round the clock then when my mom got better the nurse came everyday. They brought in oxygen, something for her breathing. After two months in bed she was better and now 7 months later they still come to bathe her everyday. She goes to Day Care twice a week at Easter Seals. The nurse comes to check her vital signs. They give you everything you need for incontinence; if she needed cough syrup or anti-biotics it was given to her. Hospice brings a hospital bed and everything she needs. It has been great. couldn't have done it without them and it doesn't cost a dime. Comes out of Medicare. good Luck.
Helpful Answer (7)
Report
This question has been closed for answers. Ask a New Question.

Recent Questions


Popular Questions


Related Questions

Ask a Question
Subscribe to
Our Newsletter