Am I the only one who feels like hospice just adds more stress to your home life?

My mom just passed tonight. On hospice, I’m thinking under 3 months. They were fantastic. My mom had 2 cna visits per week , an RN , weekly, social worker, monthly, minister weekly, who by the way, came to my moms bedside today. I left the room.. I could hear him singing to her…the bereavement counselor will probably be reaching out tomorrow. Tonight the hospice nurse came out, called the funeral home, filled out the paper work..

I knew I drove the boat as the POA.. I also knew they were the professionals who know their job..

A Godsend..

Mom was on hospice in January. Soon after hospice started, the nurses told me she was doing so well they expected her to continue to August. In April, after a great game of cards with two sisters and me, I put her to bed and she never woke up. I suspect she had a stroke. She'd had a great day then died her sleep, a blessing.

Hospice was wonderful and helped me more than they helped Mom--and they were great for Mom. They even had a counselor and he made a world of difference for me, especially since I had two narcissistic sisters making my life hell. They were gems.

Frankly, get your loved on hospice as soon as eligible. They do only good for the patient AND for their loved ones.

My Husband was diagnosed with Alzheimer's. I also think he had Vascular dementia.
After my Husband broke his hip, went through rehab and was back home I stopped at the Hospice that I passed pretty often.
I talked to someone, they apparently contacted his doctor and while I was there they approved him for hospice service.
Within that week I got a call from the CNA to schedule her visit.
I got a call from the Nurse to let me know when she would be coming.
I began getting supplies (that I previously had to pay for)
I got equipment that made it easier for me to take care of him.
And that equipment changed as his needs changed.
He was on Hospice for almost 3 years. not a typo...3 years.....
Hospice with the help, education and support that I got made it possible for me to SAFELY keep him at home.

I loved my hospice workers. I had hospice in for my mom when she was dying of pancreatic cancer. She was assigned an RN who worked around the clock during those last moments. She came to our home late that night, and returned as soon as I called around 4:00 am after my mom had died. She helped prepare the body, got rid of the leftover morphine, and other things needed. I don't remember a minister coming because it was so long ago. There was also a social worker involved too. My mother was assigned a home health aide and my father's insurance paid for my mother's hospitalizations accept for about $340.00 dollars.
Hospice also provided grief counseling for us for up until one year. I have nothing but good things to say about them.

The wrong hospice organization can indeed be more stressful. Feel free to fire them and find another company.

I fired my dad's first hospice company when they didn't return phone calls, became argumentative when I tried to change the time for a procedure (so Dad could see his granddaughter one last time), and the straw that broke the camel's back was when the social worker, in response to my question if there were support services for the family, said "This isn't about you!"

They were gone the next day, and I told them EXACTLY why.

I found another company and talked to them before firing the first company (ahem, Vitas), and the new company took care of everything, including telling Vitas they were being replaced and arranging everything for a seamless switch that inconvenienced my dad for a total of 45 minutes while his hospital bed was being switched out for another one.

It was the best decision I made, because a couple of weeks later, after spending another sleepless night on a hardwood floor next to my dad, I called the new company and said, "I can't do this anymore." There was a nurse at the door within two hours, and a nurse was there for the whole night and all the next day until Dad passed.

I was also caring for my mother and trying to navigate her dementia along with the death of my dad and her husband of 66 years. It was difficult, heartbreaking, and surreal, and the only thing that kept me from collapse was the second hospice company.

If you aren't feeling like hospice is working with you, then get another company in there. Their job is not only to support the patient but also you, the caregiver. If they're failing, then let them go.

Kas, could you tell us a bit more about why you feel that hospice just ‘adds more stress to your home life’? Some hospice services seem better than others, and clearly it’s different in immediate end-of-life from some of the long-term experiences. What has happened for you to feel this way?

I think it depends on lots of different aspects.

My daughters hospice was in our home. She had cancer. She was 30. Her hospice lasted for about 4 months. They were a wonderful, caring agency. They came about 2-3 times a week. It was just enough help. She was very strong almost until the last moments and extremely cooperative patient,

My brother’s hospice agency was horrible. My brother also had the same genetic condition that my daughter had that caused their cancer. He was mostly not awake by this time he was placed on hospice. It only lasted a few days before he passed. He was on a morphine pump from extreme pain. The nurse they sent could not figure out how to make the morphine pump work. My nephew got on the phone with the doctor and he figured it out. The next nurse came a few hours later and said she couldn’t stay because of their cat as she was allergic to cats. We figured the agency should have been aware of clients pets before they sent out nurses.

My dad’s hospice agency was also wonderful and my mom was provided 24/7 hospice help which I was informed is extremely rare. This lasted for about a week. My father was renal failure and a extremely uncooperative patient. He was 80. I thank god my mom had that much support from the hospice agency. She had been caring for my bedridden father for years and doing all his dialysis herself at home. She really needed the help .

Sorry to be long winded in this response but the short answer is

1) the condition, age and level of cooperation of the patient
2) the age and health of the current caregiver

I think help at this stage is extremely helpful and if your not happy with the hospice agency inform the social worker who set it up it needs to be changed,

My mother received hospice care for almost two years. My sister and I are hours away and our dad was wearing out. It was a blessing to know that someone was seeing mom on a regular basis. It was a relief to dad not to have to prep her meds every week, make sure she was bathed, and be her only contact. Mom was glad to talk to the nurses and the aide except on days when she was moody and told them to go away.

We also did hospice in our house for my mil. She moved from home health care to hospice within the same agency over a period of 8 1/2 months. She liked talking to the nurse, she liked the bed baths given by the aide. It was a very positive experience for all of us.

Hospice has taken stress OFF of me.

Twice a week, an ANGEL of an aide comes and gives my mother a shower.

A nurse, also an angel, visits and assesses my mother medically.

A chaplain and a social worker visit her as well.

The doctor that works with them is very responsive and proactive.

My husband was dying, I couldn't deal with him at home, I wasn't getting any sleep, I had to run the business, I was a zombie.

I owned a mobile home in a park near my home, I placed him there with 24/7 Hospice help, maybe 10 weeks. The last two weeks I moved him to hospice outside of the home, which is where he died.

IMO, don't wait, serves no purpose, accept the reality of the situation and make a plan, move forward.

Take care!