My husband has moderate dementia, stage 4 kidney disease and diabetes II. I am torn about what to do.

It’s time to consider his overall quality of life. Maybe getting to the point where the cures and fixes don’t make sense.

Also, Hospice will provide another layer of care. Many times patients improve and “Graduate “ from Hospice. This is tough territory. Good luck to you.

Talk to a couple of hospice providers about your concerns. Ask the hospice if they provide therapy for comfort.
Ask how to go off hospice if you wanted to change your mind and send husband to the hospital should he fall. Posters can tell you of their experiences with hospice but you need to know what the hospice you would actually work with has to say.
Come back and let us know what you learn.

Perhaps the biggest obstacle to getting the most out of hospice care is that many people wait until the last minute. If hospice determines that he is not yet ready, you can call them again later.

I felt bad about giving up my husband's outstanding doctors. But they were outstanding because they worked diligently on fixes for whatever came up. Once you decide you are not going for "fixes" anymore, then their role disappears and a doctor with a different focus is appropriate.

How old is he? If his dementia is mild and manageable, for example if he can under stand and follow instructions, then he will be fine at home. It is your judgement. You still need caregivers .

My Mom was on hospice for the last year of her life. She was in decline after a broken hip and had Alzheimer’s. The care from the nurses, social worker, music therapy etc. was excellent. They also provided a lot of counseling for the family. I thought initially “hospice” meant imminent death. She qualified because she met the criteria- as she was in a slow decline. It’s so hard to make these decisions. Hugs 🤗 to you.

Here, you can leave Hospice when needing obvious care for a non-fatal problem, and return to it when the extra medical problem is taken care of (or no longer treatable).

You can elect to go off Hospice if there is a fall and you want surgical intervention then rehab.
The concern is depending on how severe the dementia is at that time is:
1. Will he tolerate surgery including anesthesia well.
2.Will he tolerate a hospital stay and then re-hab facility stay well?
3. Will he be able to participate in the re-hab? How well will he follow directions?
4. How well will you be able to handle a spouse that will have more limitations once he is back home?
Once back home he can go back on Hospice.

A friend of mine had a similar experience. Her husband was on Hospice, he fell out of bed at the Memory Care facility he was living in and broke a hip. Off Hospice for surgery. Back on Hospice once he returned to the facility. He was not able to participate in re-hab so he was pretty much chair bound at that point, he had been prior to the fall and surgery as well so this was not new.
The main reason for going off Hospice is that the Hospital will bill Medicare for services as would Hospice there can be only one payee for services at a time.

Call Hospice and have a good "interview" with them and find out all that you can about what can and can not be done, what they will and will not do.  Keep in mind there is not just 1 Hospice just like any business there are several in most areas.  There are "For Profit" and "Non Profit" Hospice Organizations.  (personal note..the Hospice that cared for my Husband was a Non Profit and I could not have been more pleased with the care he got, the care I got. the dedication that everyone has is amazing from the CNA, the Nurse, Social Worker to the Chaplain, all were outstanding. I/we got supplies, medications and equipment all within a day sometimes within hours of it being ordered!)

If hospices services will improve the quality of his day to day care, then have him evaluated. My mom just started hospice services. As it was explained to me, there are two 90 day periods at the beginning. If your loved one falls and you believe they require hospitalization (say a broken hip), you must notify hospice and revoke hospice first (sign a form), then send him to the hospital.  Medicare will pay for the hospital bills. Say, for example, this occurs on day 40 of a 90-day period. Your loved one, once they have revoked hospice will not be able to resume hospice for 50 more days. In other words, they must wait until the 90 day period is done.

There are so many twists and turns to taking care of an elderly person, let along with dementia. I struggled daily with my mom, doctors, the system. It was beyond infuriating and the answers you got were very contradictory.
I agree with the ones who said call Hospice and have them come out and talk to you. Hospice does not work the same in all states or even in state in different counties. That is what makes it so confusing! So make the call and have the meeting and ask all of your questions so you can make the best decision you can for him. That is really all you can do, your best. Good luck.

Speaking from my own experience, I wish I had called hospice earlier. They brought me everything I needed--including help with bathing and dressing the wound he had on the back of his foot. They delivered our medications to the front door. They brought all of the equipment that we needed, wheelchair, bed, oxygen, commode...you name it, it came. It truly was a gift because they showed me how to do things I never would have known how to do on my own.

We were on hospice for less than a week before he passed away but they came and handled everything, made all the phone calls etc. Before they came, I was doing everything. I was helping him to the bathroom, take showers, eat, all of it. They showed me how to do things in an easier way as well. I would have them come talk to you. They basically said that you can always try it and if you don't like it, you can go off of it.

I am in California and we kept our primary care doctor. He supervised my dad's care and the nurse came out every other day. I know how difficult this decision is but please talk to the hospice rep. You will know in your heart if it is the right decision.

Hi, I work for a Hospice company and I believe we add life to each day as Hospice is truly about living fully now. The previous post is correct, most people wait too long to receive the additional care hospice offers. Therefore not getting the most out of the excellent benefits hospice provides. You want to ease in to it as you do not want a revolving door of new people in your home and caring for your husband at the last days.
Hospice benefits are at no cost to you and will provide whatever equipment and supplies your husband may need. Whether it is a wheelchair, hospital bed, potable oxygen, Rx delivered to your door etc. They also provide music therapy, pet therapy, social worker, support services for you and your family not just your husband.
You can also keep your primary care physician if you prefer and switch if/when you feel comfortable. Your pcp can refer you to several and you choose the hospice company you feel is the best fit. I hope this has helped a little in answering your questions. Please remember to take time for you and to take care of yourself as well. Blessings to you.

I think Grandma1954 gave you super answers, most of which I agree with....My husband is in a Memory Care Unit and although he is receiving good care, I thought he could get better...In talking with them, it was suggested we go with Hospice..At the time, I didn't know, Hospice would take care of dementia patients and/or come to the Memory Care Home...After talking with them and them explaining everything, we agreed and it has been wonderful...They have supplied all of his needs, visit him at least 3 times a week and I have seen the biggest difference, not only in his appearance..My hubby had always been on the go, never a sitter and now, being in a wheel chair has been tough....He constantly is trying to get up, has tried to walk and has had many falls, some ending in a trip to the ER...If he had broken anything or needed surgery, I was told, Hospice would sign off and then pick up again when he returned to the Home...If when the time comes and I want to bring him home, they will be right there with me...Along with all the care they are giving my husband, they still have time to call and ask how I'm doing...These people have been wonderful, real angels of mercy......
But, in answering your question, I think it would be best to sit down and talk with Hospice......

Primary care doctor can order home PT and if he falls there is the fire department. Keep him home as hospice care around the country is not uniform as there is no standard. It all depends on whether you have your own insurance or eligible for Medicaid.Hospice Medicare only allows for limited care time and you are discharged to home palliative. If he is cognizant, I suggest stay at home. Ask the doctor what he means by home hospice, that comment needs explaining as to what services he feels Medicare will allow. I believe he has used the wrong term.

We didn't have to give up our primary care physician - we just had to contact Hospice in the case of a fall.

My husband was diagnosed a little over 2 yrs. ago with IPF. He quickly lost the ability to do much of anything. I quickly became overwhelmed with the responsibility of being a caregiver to him, taking care of house, farm and animals. At our last visit to the Pulmonologist I asked if we might be eligible for Home Health. He looked rather oddly at me and said, "I think Hospice would be better".

Why had he not mentioned this before? Surely he could see Mike was in terrible shape and I was exhausted. Taking him 60 mi. for an appointment that day, getting his very heavy wheelchair out of my car and him in it was excruciating. I called a friend with Hospice experience and got a referral as soon as we got home. They arrived within a few hours. We had nurses, Chaplin, social worker, folks delivering equipment, etc. I have never been so relieved in my life and Mike felt much more secure. It was like hosting angels for the 3 days before Mike died. Even after he died they checked on me periodically for weeks/months.

I wish the doctor had mentioned it much sooner. I would have been in much better shape to handle everything I had to handle that followed.

So much information. Here are a few websites to gain more information regarding Hospice Care. In addition, I agree with SAcare. Hospice is a wonderful option and like any healthcare decisions, being well informed is vital. Sometimes even needing to talk to more than one "professional".

In regards to Hospice regulations. There are federal and state regulations. Here are a few sites to check:

Hospice Patients Alliance
hospicepatients.org/hospic38.html

National Hospice and Palliative Care Organization - as you can see they have developed tools to assist hospice groups with compliance with the Laws & Regulations.
nhpco.org/compliance-laws-and-regulations

Blessings on your search.

I varies with each State, but generally, Hospice care is for those who have an incurable (or terminal) condition with fewer than six months' anticipated life expectancy. Not everyone qualifies for Hospice. Simply being "very old" is not a criterion.

But as others have noted, many people wait too long to go on Hospice care, often spending fewer than two weeks on it. A few people have told me that to them, going on Hospice meant that they were "admitting" that they were terminal, or that they were "giving up living." Hospice provides such great services, that I don't understand why people would not use it, given the option, since it greatly improves a person's quality of life for whatever time they have remaining on this earth.

Can you get him to use a wheel chair? Dad could get around pretty well with a walker, but he would get a little overconfident, didn't need it, or forgot it. Eventually, a fall re injured the compression fractures that started us back to square one.

Have you contacted his physician? If not, do so.

Dear miw1940,

I hear you, it is a difficult decision to make. I don't think any of us want to even hear the word hospice. It feels like there is no hope for a recovery.

The most important thing is to get more help for your husband. Maybe this is just one way to get more home care and more help if he decides to come home. Keep talking to your family and friends and go with your heart. You have to be comfortable making this decision.

Thinking of you. Sending you hugs.

I thought I read somewhere that you can keep your doctor in hospice.

My mom died last month while she was on hospice, it was the best decision I made for both mom and myself. The support that we both received was great. After numerous visits to the hospital and rehab my mom had dementia and end stage renal failure. Missing treatments due to symptoms of sundowners, not knowing who I was, losing body control, becoming combative. Her last hospital visit, the doctor said, if you can't get her to dyalis, I would consider Hospice. After looking at the way she was living I had no choice cause their no cure, I couldn't stand it no more. The support during I received was great they help to be comfort, and treatment, hygiene. The nurses social worker, chaplain. I spend my talking to mom(who was. Sleeping) holding her hands saying I love her etc. After she pass, they provide help for me as well. Yes it hurts, but the support, will try to ease the hurt. Keep the Faith God got your back.

My husband was in the Methodist Hospital hospice for the last two weeks of his life, going there after a week in the hospital itself for a massive stroke. He could not swallow, and we had a POA for health care not to put in gastric feeding tube. I was very pleased with his care, difficult as it was for me to watch him fade away. I would want the same for myself.

Wonderful to see such positive stories about Hospice care on this thread.
i agree that many wait far too long to call hospice, as it is not unusual for a loved one to die within a day or so of admission if not that same night. The after care is also very comforting if you choose to take advantage of the services offered.
As the loved one has stage 4 kidney failure his life expectancy is probably weeks or less rather than months so opting for this care now is an excellent idea. This is in no way a sign of giving up,it is a way of ensuring the final stage of life is as comfortable and fulfilling as it can be.

Ask your doctor to put you in Palliative Care. Covered by Medicare, Medicaid and most insurances. "You can also have this type of care at the same time as treatment meant to cure you. In short, you can expect that your quality of life will be improved. You will have relief from symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. You can also expect close communication and more control over your care."

We asked my mother's Primary Care doctor to put her in it. She fell, and had surgery while still in the program. She was in Palliative Care at home for 10 months before transitioning into hospice with the same company. The sooner you get into the program the more benefits you will get out of it. We received a medical bed, table, oxygen machine, portable toilet, bed pads, adult underwear, and other things to help us care for our mother. Things got so much easier for all of us, and you can check out of it if you improve.

A word of caution about the company you choose. Keep in mind that the company you choose may determine how you die (should it come to that). We learned that the hard way. Make sure the company provides in home IV pain control. Also recommend going with a company associated with a hospital because it will have a full arsenal of drugs at its disposal should you require medication some pharmacies do not normally carry. If you do not feel the nurse assigned to you is capable of meeting your needs, do NOT be afraid to request another. If you are not satisfied with the company you choose, you have the right to switch to another. If they aren't doing things right in Palliative Care, then it could be even worse should you transition to hospice with them. Do not go with a company just because your Primary Care doctor is associated with it unless it meets the above guidelines. In short, do your research before selecting a company - the quality of your life AND death will depend on it.

Is your husband really ready for a Hospice?  With Type II diabetes, stage 3 kidney disease at 75 years old, the 24 x 7 caregiver for my Mother, I am not that far away from your husband as far as health conditions. Also have a stent and a pacemaker but absent dementia...just a little forgetful, been that way all my life.  Consider our position. 

Singing in the Church Choir keeps me in the word, happy and very dedicated to caring for mother. We have arranged that I stay with Mother in her 2nd Senior facility in Independent Living a compromise with my brother for now but I would rather be in my home with Mother with me and my son and with our family.  At a prior facility, due to a false complaint about me to an abuse agency I am prevented from taking Mother home although the agency found that Mother and I have a great Mother daughter relationship. Take what Katie II seriously. Mother and I went from a rogue facility that forced me out with the help of my Brother, his wife and a Cousin. Mother went from Independence with a few dizzy spells to an invalid, confused, almost died and almost lost her eyesight. I was drug through the mud trying to protect Mother. When Mother's Glaucoma specialist from a leading University documented Mother's declining Glaucoma with pictures and a recommendation that we have an intervention with me giving Mother her eyedrops for three months, and other documentation, we were able to get Mother out of there. They had their hooks into us and were negligent, criminal and abusive. We have been at the new facility for a year. It s just 2 miles away from my home. They are loving, respectful, in a community where my son and I and now Mother are known and respected.  Mother has come a long way from her lowest point at the old facility.  I do not complain here.  When Mother doesn't like the food on the menu, I prepare meals in the room.  Mother has high blood pressure and cannot eat hot dogs, bacon (nitrates) and salt and doesn't like ham and pork.  I have more trouble with the food as I should be eating organic, fat free, no white flour, no sugar no salt foods.  I shop and should cook as much as I can for us but it falls short of how we should be eating or could be eating at home with a full kitchen with all the conveniences and space.  The point is.  There is nothing like home.  MOST IMPORTANT,  FACILITIES DO NOT PROTECT AGAINST FALLS.  IT WOULD TAKE A PRIVATE DUTY NURSES AID WHICH RUNS $25.00 PER HOUR PER 24 HOUR DAY or a family member staying with their Loved One(like I am doing) for any degree of protection against falls.  Resident's fall at even the best facilities.  Sometimes they aren't found until morning.  Everyone wears a  button to call for help if they need assistance.  If they fall and are unconscious or don't remember the button, it doesn't get pushed.  At the bad facility often Nurses Aids didn't answer calls if they were sitting around the Nurses Station.  That doesn't happen here. Be very careful in your decision making that you don't have guilt later on. You are fortunate you have a choice.

From whT you said your husband is not six months from death. Once you are in hospice and are not given a terminal diagnosis say goodbye to getting what you need. Most if not all hospice receive federal monies that means they have to go by federal guidelines. If you wanted some respite care they would remove him from the house. They only give you enough diapers for four chsnged in 24 hours. I can go on and on. The chaplain from hospucecwarned me it is not what it seems. He was right on the money. I had to take my mom out of hospice. Remember they cure nothing. If someone has a wound and is incontinent they put a guaze and some tape. If not incontinent they just put tape. Everyone upon entering hospice takes a very strong antibiotic. It would have killed my mom with stage 4 kidney failure. Bike I said I can go on snd on. They blinded here. It isn’t what it seems at all. Nothing good came from them. Nothing.

miw1940 - my first thought is what does your husband want? If he is not able to verbalize his wishes at this time, what do you think he would want? I also agree with talking to the hospice you would be considering. They should be able to answer all of your questions. Blessings to you and your husband.

The entire hospice/palliative scene is now a routine that requires a total review to be uniform with responsive treatments that allow the patient comfort and supports the caregiver. We get so many different versions but no definitive answers. The solution is a new protocol for home management, critical care nurses, keep the patient at home and monitor all vitals. Nursing homes are overwhelmed and I have been reviewing these alternatives that are more cost savings allow a better patient outcome utilizing all the allied treatments and methods at home. Stay with your loved one remember till death do us part.