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apronsbymeme Asked March 2014

When do you know to call in Hospice?

My mom has Dementia and is becoming very tired and is starting to not want to eat. She sometimes hides her food I give her so she can throw it away after. She is using her walker and does do somethings for herself but that would only be to maybe wash a few dishes or go to the bathroom. If I tell her we are going out for a drive or a walk she is excited about that but to get her there is exhausting for her. She is 90 and otherwise very healthy.....

anonymous162292 Mar 2014
Because your mother's physician recommended Hospice, then please give them a call. They will send a nurse to evaluate your mother, and if she meets eligibility requirements, they will inquire about private or state funding, and submit the paperwork. After that, they will send a nurse, music therapist, and possibly volunteers to help you care for her. Hospice helps the family and the patient. Just pick up the phone and call your local chapter. Hospice was a Godsend for my mother and I. So much so, that my mother's condition improved and she was discharged, for now. Prayers for you and your mother ~

Maria17 Mar 2014
We brought in a hospice doctor a year before my mother died and before anyone would even think she "needed" one. It was recommended so that a relationship could be built and so when the time came, we weren't bringing in a completely new doctor at the end. It worked out very well. The hospice doctor came every other month or so to visit with my mom and check her out. She worked in conjunction with my mom's long-time primary care doctor. When my mom suddenly DID need a hospice setting, we were all ready with an established relationship with the doctor and the hospice organization. So even though you don't see the end right around the corner, it's not a bad idea to establish the connection now.

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Nansacola Mar 2014
I just put my 96 yo mother into Hospice, because she needed extra care that the AL facility could not provide. She has gone down-hill suddenly over the last six months, and a recent trip to ER took too much out of her and me to ever do it again. She will have her own caretaker in the morning and the nurse will stop by once a week to check on her. My mother is wheelchair bound, has very little balance, is almost blind, and wears hearing aids. She is slowly approaching her limit. Her doctor had to recommend that she be considered for Hospice.

Stargazerlily89 Mar 2014
We put Grandma into a Hospice Program after a 1 week hospital stay and then a 1 and a half week of VNS coming and assessing that she doesn't need full time care... Mind you, Grandma was hardly eating and sneaking her food to the dog when we turned our backs, barely knew what day it was, and needed to be dressed by myself, mom, or aunt. VNS kept dening care, at home Hospice care was a final option because we got 4 hours through Hospice and the assistance to bring in 1 privately hired aid. Grandma took a major fall and refused hospital treatment and passed away shortly after. She was 4 weeks and 2 days of being on Hospice, grandma declined rapidly and passed away peacefully at home. Our aids were phenomenal in preparing us for her final days, they told us it was coming and did everything they possibly could to make my grandma comfortable.

Some people can be on Hospice programs for years and some are only on it for a short time. Talk with your mother's doctors to decide if it's time for a Hospice program. The hospice program my grandma was on, allowed her to go anywhere, but she had to stay close to home incase we ran into a problem and she needed medical attention, if she left the state and was to be admitted to the hospital, she would be dropped from the program and our process would start all over. Ultimately on her own, she knew if she went to the hospital after this fall, she wasn't coming home and her wish was to not die in a hospital. Against the rest of the family's wish, we honored grandma's wish and made the last 4 weeks very comfortable for her.

It's case by case, but when I read about hospice care, most families said they saw rapid decline in their loved one. If in your heart you feel that this is the beginning of the end, speak with mom's doctors and care advisors and see what they say. Best advice would be if Hospice is the only other option left, go with an at home hospice care.

ItTakesAVillage Mar 2014
First, I'm not able to read you whole statement. It ends with "She is 90 and otherwise very healthy...". Understand what hospice is. This is a big decision. You may want to consider Palliative care. Hospice has many rules which may include no feeding tube or intravenous fluids (water), as well as limited medicine. Caring for Dementia people is extremely difficult. It is a burden. Palliative care is the step before hospice. Really, it's an ethical question. I have reservations on the way hospice deals with end of life. I looked to religion for an answer. I followed the concept of "no extraordinary means" to keep someone alive. This is a pretty subjective statement which can be interpreted differently. A doctor suggested hospice for my 87 year old father after his second stroke. He would have passed away in 4 weeks if he would have entered into the program, because he would have been denied medical treatment. He recovered from the stroke and lived lived another 10 months on palliative care. We enjoyed each others company those last few months. It was difficult to care for him. A doctor is just another person. They may not have the same moral ethical ideals as you do. Or, maybe they do. Just be sure you know what hospice is. I think palliative care is the proper route until the last few days. I like to guide the welfare based on the patients beliefs as opposed to the government run hospice organizations. Again, research what hospice is.

waddle1 Mar 2014
Hospice is run differently in various communities. Their requirements, service, timing, structure etc. varies depending on your local factors. So, what you hear about on this website...people's personal experiences with Hospice where they live...may not hold true or accurate for Hospice in your area. For instance, my niece, in a neighboring state, saw hospice reps daily...all day...for weeks for the care of her grandmother and a couple years later, her father-in-law. However, where I live, they could only come to the home 1-hour per week for in-home attention, due to lack of staff/volunteers. My local chapter's main focus is in-patient (hospital) hospice care which is staffed by hospital nurses. A hospice volunteer visited briefly once a day. This care was for my husband, whose doctor even thought our local Hospice could/would provide more extensive care than Hospice told me they actually could provide. So, you need to get info from your local Hospice...the "horse's mouth"...so to speak.

You need to contact your local Hospice chapter to find out how it works there and what they can offer where your mother lives. They will evaluate what your mother needs and what-when-how they can provide any help. Good luck to you.

MikeB26 Mar 2014
At least in New York State, hospice home care can be great and it can cause problems.

My first suggestion is keep in mind that enrolling in hospice is not irreversible. Many people eschew hospice because of its connotations. It can feel like giving up. It's not. It's just another service that might be optimal for your parent. And you can always quit it at any time.

Hospice visiting nurses are often great at addressing issues including pain management, wasting (extreme weight loss), and the psychological stress suffered by caregivers.

The biggest downside can be that joining hospice might trigger a reduction in home care services. In New York, at least, for the Medicaid/Medicare patients I treated as an RN, hospice was a "Medicare only" program. That meant that hospice could not bill Medicaid, and patients were limited to only the limited number of home health aide hours that their Medicare covered. Because Medicaid was so much more generous regarding HHAs, these patients often lost important services by joining hospice home care.

Research that issue with your doctor or a social worker. Of course, I don't know what insurance you have or even what state you live in. Just be aware that hospice can trigger some restrictive insurance issues-- But not necessarily in your case. I just recommend that you check it out.

Also, it sounds like you're handling this all on your own. I recommend that you look into getting an aide even if you don't go the hospice route.

The other issue about hospice is that you agree to forego any treatments that suggest an effort to cure or reverse disease. Be sure that you're not forfeiting treatments you want to continue using. I encourage you to speak with you doctor about this.

And finally (sorry to be so long-winded), joining a hospice program is reversible. If you decide you want to get more aggressive about medical interventions than hospice will allow, you can usually drop hospice at a moment's notice and go back to a more aggressive insurance plan. Again, this is something you might want to talk to your doctor about.

Good luck. It's a hard situation, but it really sounds as if your doing a terrific job with it.

Kathleen2251932 Mar 2014
I worked in Geriatric Research and the conclusion is many seniors do not get hospice when they need it. There are many doctors that won't tell you when it is time for hospice. You mother is not wanting to eat. There are many doctors that will tell you to put a G tube in via there belly button into their stomach. Their are many of Geriatricians who feel this is in humane. I feel when a person stops eating they are beginning to slowly let go. My mother died in 2011 and she was strict comfort care. No feeding tube. Etc. But, it is never to soon. Your mother probably will live beyond 6 month. But, Hospice always likes to meet them when they are well. If they feel they have longer than 6 months to live. Then they will periodically checkin with you and you can always call them. I see their are NH that don't practice good palliative care. If your love one is home or in a NH. I would call Hospice. My mother had hospice at home. It was a very nice and Hospice left me with a good experience.

cbhillman Mar 2014
Remember - with Alzheimer's, one does not have to be nearing the end, in other words, six months from death. A person just has to meet certain criteria. My mom was on hospice for over two years!

Kathleen2251932 Mar 2014
You can call hospice anytime. They will come out and make an evaluation. If they feel your mother is not a candiate. Then they wont take her on as a patient. But, it is nice for them to know her. Also, as her caregiver how aggresive do you want to be in her treatment. Do you want a full code. Would you want a feeding tube etc. any heroic life saving measures would not make her a candidate. My mother had dementia for 12 years. I was her Health Care Proxy. I wanted my 3 siblings involved in what I and her physcian thought would be the best care. I worked in Geriatrics and I saw the bad decisions family made until they decided to keep their loved one just comfortable. I wanted this done years before so everyone would be on the same page when the time came. I told my family we could do it together or I will do it alone. We all sat down with my mother's Geriatric MD. The first question asked was about CPR. The doctor told my family if my mother where to have CPR. She would not come back as she was. That pretty much put everything into reality. No one gets better from Dementia. They eventually die from it. I made my mother a DNR, DNH Which means no CPR and do not hospitalize. DNH does not include my loved one fell and needs sutures or they broke a bone. But, to continue. My mother was also no feeding tube. Comfort Care only. My mother got weaker and weaker and fell down the stsirs years after my family had the meeting with the doctor. She had spilt her head open and was taken to the hospital and admitted to the trauma unit. The second day I called hospice and i met with them. It was decided my mother would go on hospice. I brought my mother home and went out to buy a bed so I could be right next to her when she needed me. Hospice came and brought all her medication and her Comfort Care box of medication which they explained how to use. I also had my 40 hr girl who came from an agency through Medicaid. The key is for the patient to have less than $2000 in their name. Apply for medicaid for home services. Just call your local aging care home care agency. They will help you with Medicaid. This is not Nursing Home Medicaid. But, a Medicaid for low income people. My mother owned her own home and this Medicaid does not attach to the home. We did this 6 months before she really got sick. We only had a couple days a week. Once they become bed bound they would get 40 hrs of service. I was lucky the first time to have the woman. You may go through a few. Hospice will give you 16 hrs of service per week. You can use them for when your regular person has a day off. My mother was on hospice for 6 months and then she had a peaceful pain free dignified death in her own home. If I had to do it over again. I would do it the same way again. No regrets! My mother had dementia for 12 years. I lived with her the last 8 years

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