Where to spend last days

We had a very good experience with a hospice when my father died. It was a beautiful place, very quiet and nurturing for the families with great care for the patients. This was a good situation for us, because my dad's cancer had spread so much that they discharged him from the hospital and we were just waiting for the end and trying to keep him out of pain.

My mom died in a hospital, which is a much less friendly situation for families. The circumstances were different though, because she died within 48 hours of them stopping chemotherapy. So we didn't really have time to choose our situation.  If you have a choice , I would say a hospital is not the place to be, because they are so busy fighting against the inevitable, they don't provide the families with much support, either practical or emotional.

Here were the specific differences we experienced:

Hospice staff were always kind and attentive. They would take time to answer questions, talk with us, talk with my dad, and even inquire how we were doing. There were many kind nurses at the hospital, but they are all short on time and over-worked. They don't have time to talk much or help you figure out what needs to be done in terms of preparing for your love-one's death.

The hospice had a kitchenette with snack food, cereal and milk, coffee, etc. It was a 15 second walk from my dad's room. This allowed us to spend more time with him.

The hospital is noisy and busy - nobody gets much rest there. Nurses and RT's were constantly coming in day or night. The oxygen was very noisy as well. None of that in the hospice.

In the hospice there were young volunteers who would come in and sit with my dad, or sit and talk to us. One of them was there when my dad died and sat with my brother for a long time after he passed, comforting him and offering to help with anything that needed to be done.

The hospice was set up for kids to visit with their parents. My son was 5 at the time and didn't like being in the room with my dad - I think it scared him. In the center of the building, not too far from any of the patient rooms was a room with couches, tables, a big tv, toys and lots of games. He could sit out there while we spent time with my dad.

Jen,  your point about the hospital was really true for me too.  For my mom, we didn't have much choice at that moment, and would have moved her home or to hospice.   We'd talked about it, and it seemed like being at home but with hospice care would have been our first choice. 

I would have liked to just sit with my mom for some time after she died, and was able to convince the hospital to just let us stay in the room for about 2 hours.  It gave us a little closure. 

When a close friend's mom died last year, she had been at home with hospice care, and it just seems like hospice staff really understand what's going on and are caring in a special way.  (Why is that a surprise?)

It does seem like we are moving towards hospice care like some new moms are going for doulas and midwives at home or birthing centers - less invasive and scary than a hospital.

My grandmother died under hospice care at home, while my father was in the hospital. I can also recall a cousin of my grandmother's dying at home, where he wanted to be. His grandchildren would pop in and say Hi to grandpa, then go about their playing business, and he loved it.

I guess if I had to choose for myself, I'd want to be at home; at the same time, I'd worry that I could turn the room I died into someplace scary for my children/grandchildren. Hm.

This is a fascinating discussion. Imagine choosing a place to die. I always picture my dad just dying wherever he happens to be at the time: grocery shopping, reading the paper at his dining room table, behind the wheel of his car --- oh dear on this one!  He's 85 but still hanging in there. But has heart failure, so is at risk for a heart attack.

These would be the best way to go, except for while driving where he could take others with him.

With a terminal illness one does have more choice, which is really tough, though at the same time one of those beautiful things. Sort of. I mean, I can see the beauty in this --- the place of death.

Most people probably choose at home. I wonder about fixing the house or room up in any special way, like with flowers or art work, keeping it clean. Or just leaving things how they've always been. This is probably the most comfortable.

Any of you have personal experiences with this? Do you prepare the final nest in any specal way, or leave it be, in its natural state?

I remember reading or perhaps seeing some old movie, where there's this old indian, and he's decided its time for him to die, so he just gives away his stuff and walks away into the mountains somewhere to wait for death.

There's something about this idea that is quite appealing.  I believe that if I knew I had alzheimers or something like that in my future, I'd want to be able to gently walk off in the woods some cold winter's night and just go to sleep before it became a nightmare for someone else.

There is a certain romance or appeal about that, isn't there? At the same time, i picture being in a lovely room with light and color, lilacs in a vase, my favorite music, and I just slip away.

My daddy was 90 years old, diagnosed with Alzheimer's in his early eighties. He had done well for most of that time but started to go downhill rapidly. We moved him to an Alzheimer's unit about six weeks ago. The sixth week he fell and they had him taken to the ER, where he spent 23 miserable hours, lots of tests but little attention except for me. They sent him back to the Alzeimer's unit. Eleven hours later he fell again, in the early morning hours. When they found him, they again sent him to the ER. More tests but little attention from the staff even though I kept telling them he was behaving strangely. He was so agitated, so obviously miserable and confused. But they said he was fine and decided to discharge him. As they removed the IV, his heart stopped. Suddenly they were reaching for equipment, alarms going off, people running in with crash carts. Now he had their attention!

It's not that I regret that he died. I know that had he lived he would have gone through so much suffering that he didn't deserve. But I can't help but feel that ER was an awful place for him to have to die. Yes, I was with him. But still I wish he had died in his bed, or even on the floor where he fell, near his bed and his chair and his things, and people who knew him and cared about him. The ER is cold and uncomfortable and unpleasant and frustrating and minutes are very long and hours take forever and a daughter's caring isn't enough to....

My gut reaction is to want to tattoo on my forehead, "When I am old and confused, DO NOT take me to the Emergency Room."

Hi Cita,

I'm so sorry about your father. What an awful situation, and I'm sorry things happened the way that they did. Your comment at the end about the tattoo leads me to remember - it may well be important that we get advice from our loved ones one what they want to have happen in certain situations so we're not guessing -- some sort of advance directive on care.

Thinking of you,

Laura

Hello all,  I just joined and was reading everyone's comments.  I definetly don't want to die in a hospital.   I don't want to die alone.  I don't have any children plus I don't know if I would want my kids to see their mom die. (if I had them).  It really depends on how I die.  I would like to have my dog at my side and or cat, I do know that when I die I want any "fur-children" that I have to be put to sleep and put with me. In fact, the dog I have now, Heather, when she dies I am going to have her cremated(spelling?) and I am going to keep her with me and I want her put with me when I die.  I know that it will just be her physical remains and that her spirit will already be waiting for me someplace else, but I don't want to make the journey by myself and if she is with me then her spirit will find my spirit quicker and then we can go together.  My Grandmother died in a convalesent hospital and my mom took her pictures from home for her to look at.  But, I think that was more for my mom.  Grandma didn't have any serious illness or disease she was just old.  I don't believ she should have been put there at all and that she should have been able to die at home.

she didn't like to be fussed over but my mom and her twin brother were in charge and taking care of her and when she got where she required alot of personal care, some loss of  control regarding certain body functions and needed more watching because of she'd fall they decided it was more than they wanted/could/should or had time for and shipped her off to a convalesent hospital and went on with life. Those places are gross, they smell like pee, poop and death and I would think unpleasant.  Now, if she had a serious illness where she needed medical personnel to administer meds to make her comfortable then I think a hospice would be the place to be.  One like  Jen described sounds nice. There are so many pressures and stress involved when you are losing someone you love that having understanding caring  and experienced people around is almost a necessity.  The first few minutes/hours after a death are very critical and can make or break a survivor whether it's a friend or family that is left behind.  When it's my moms time, I sure don't want paramedics rushing in and taking her away from me at least not  until I had some quiet time with her, alone. But, I would want someone knowledgeable in that kind of situation to be there.  I know I am gonna lose it when moms time comes and to have a bunch of strangers around her would make me VERY TENSE>>  For me personally, I just want to nod off and then be gone.  Advance directives are nice, mom has one so I know her wishes on that matter and I can/will abide by her wishes.  I want her to die here at home, I want to be with her, I don't want people scaring her, I don't want it loud and unpleasant for her.  I want her to be able to feel God's presence and hear His comforting words.  I don't want her to go at all.  Good night. 

Cathie, I feel compelled to comment on your remarks about your Mom 's "shipping"  your Grandmother off to a convalescent hospital and "went on with life". I wonder where you were when that decision had to be made? Were you available at all hours of the day and night to assist in your Grandmother's care. Even when expert medical care is not required, the requirement to physically lift an elderly person from a bed to the toilet or wheelchair is often more phycially demanding that a daughter or son can manage. I am 60 years old. My Mother with Alzheimer's disease is 86. She can no longer control her bodily functions, has forgotten how to stand by herself, and has other deficiencies too numerous to list. After a recent hospitalization and after 16 days caring for her in her home, leaving my husband alone 100 miles away, I had to give up and place her in a Nursing facility. I would bristle if my son or daughter made the remarks that you have made about your Mom's decision.  When you haven't walked in her shoes, you should not JUDGE your Mom's decision.  I could say more but maybe you get the point!

Responding to the statement: "Those places are gross, they smell like pee, poop and death, and I would think unpleasant."   When a disabled person of any age cannot control bodily functions, in any setting whether a personal home or public facility, controlling odors is extremely difficult. If you haven't tried it, maybe you should volunteer in one of those "gross" facilities and see how well you would manage.   We certainly don't want our loved ones to suffer, so it behooves us to do as much as we can to help their situation. Our assistance doesn't have to be limited to a parent or grandparent. Trained volunteers can do a lot to alleviate lonliness of those in nursing facilities. In many cases, those suffering with dimentia are not aware of whether the volunteer is a stranger or a loved one who has come to visit. 

Dear Anonymous,  (both responses)  Where was I?  Was I available?  YES>>>>  I sure wouldn't want you related to me in that situation.  Whether they know who you are on this planeor not, they will know if the afterlife.    AND I HAVE WORKED AS A VOLUNTEER IN THOSE PLACES.  MAYBE YOU SHOULDN'T CONDEEM ME UNTIL YOU HAVE WALKED IN MY SHOES.  i hope your family isn't as cold to you as you appear to be to others. 

Wowsers.  You know it is sooo hard to care for our parents, our grandparents.  Dealing with our siblings.... well actually pretty much any relationship .   

And I think some times we just need to vent, to feel heard, to feel appreciated, and one of the tough things about the caring process is that sometimes those we are caring for can't express that appreciation back to us.  That is one of the reasons that I like this group here.  I can express my feelings, I can offer my opinion, and it feels safe and trustworthy.  I am here because there is a caring community here and  I value all your opinions and all your experiences.  

THANK YOU REBECCA..........