When we sit vigil with the dying the last thing on our minds is room design, but immediately after my mother's death I made a list of things I saw that made the experience more uncomfortable than it could have been. At the time I was busy with grieving and unwilling to follow through but on this one year anniversary it is on my mind. Some of the negatives I noticed:
The room was furnished with donated cast offs that were not necessarily practical of comfortable.
The bedside chair where I spent my time could have benefited from a foot rest and a recline feature would have been very appreciated.
The closet held a mish-mash of supplies, dated reading material and assorted cast offs. It wasn't until the final hours that I discovered a handbook that I should have been brought to our attention on day one.
I'd done a lot of reading in preparation for end of life, if I hadn't been self informed I probably wouldn't have had a clue what was happening. For example when I called my sister to tell her there was mottling she asked "what is that?".
Although we were offered coffee or something to eat nobody told us it was all complimentary. I doubt we would have eaten anyway but...
Did I mention that bedside chair??
It was more like talking to a used car salesperson - they were focused on getting a patient, finding out personal information before they were entitled to that privileged information.
And I thought the so-called amenities sounded inflated, much better than they actually were. It wasn't hard to tell that they were using a sales pitch, which I found very offensive, and actually revolting.
My mother passed overnight from cardiac arrest; we weren't even there. I was called the next morning, and felt left out. For some time I questioned whether or not everything was done to save her, but I do know that she knew she was in a place of no return or improvement. I think she just decided to give up.
But her roommate had also been coughing and obviously was quite ill. Dad and I both got whatever she had, and I can't help wondering why she wasn't moved before her illness spread to us. In retrospect, seeing how my sister suffered, I'm glad that Mom's departure was quick.
By the time I called my sister and we went to the hospital to tell my father (he was battling pneumonia and CHF, the onset of which occurred when we visited Mom the day before, Mom had already been moved to the funeral home. And once again I felt left out, as if there was a gap in her last days and her funeral. It was a strange feeling of something happening w/o our being involved.
When my sister died, she was already in a state of semi-consciousness in a hospital. A private room was arranged for us on a quiet side of a quiet floor. We stayed with her all night, holding her hands. I don't recall that anyone brought us coffee or anything, but the attending doctor thoughtfully left us alone with our thoughts. She didn't return until my sister had passed, and after I had called her back in.
I had a sense of closure, even if my sister died far too young. But I was there, I knew she wasn't going to survive, and she had good care. And 45 minutes before she passed, I could feel a change in her hand which I had held for the last several hours.
Although I wasn't present when Dad passed, I was sure it would happen that evening, and it did, 50 minutes after I left - just a little over the time it took me to get home. When I would leave Dad's house while he was still alive, he always called to make sure I got home safely. I thought he waited the typical time before leaving.
Other than my mother's passing, I didn't really feel deprived, or uncomfortable in the environment. I was impressed with the staff, with the compassion and support, and actually was surprised at how much they extended themselves to accommodate us.
I'm very impressed with the experience you had. It seems as though the staff was very conscious of and attentive to your needs. Was this a nonprofit facility?
And I am sorry for your loss. Even if the surroundings and support are high quality, it's still a loss and sadness for the family. Please accept my condolences, and thoughts for comfort as your family moves forward.
I don’t know if they are for-profit or non. I do know there are self-pay and Medicaid residents there, though only the office knows who they are.
My step dad died in hospital, so really there is not much that can be done there. But my community has been fundraising for a hospice house, which will have 7 beds. It is always hard to find donors and I am sure when it is built, there will be donations from various organizations and perhaps cast offs or secondhand donations.
Your post is quite insightful and it is generous of you to post it an what must be a troubling anniversary.
I only noticed how furnishings can change a feel in a room from when I performed my CNA practicals at a nursing home last year. Most rooms were basic hospital bed and furnishings, clean, but no particular person's soul. I walked into one room that was as if the elder [what this nursing home called their residents] would have in her own apartment: her own furniture, knick knacks, artwork, and reclining chairs! The calm and warmth of the room would make me never want to leave it.
I had just arrived home from holding vigil at his side throughout the day when his nurse called to tell me that he had passed away. I’ll never forget walking up to the nursing home entrance late at night and seeing two CNA’s standing outside waiting for us like an honor guard, so we would not have to walk in alone. In their room, they had brought in several chairs, a tray with coffee, cups, a pitcher of water, and some snacks. My father had been bathed and put in a clean nightshirt. We were left to say our goodbyes and pray until we signaled to them that they could call the funeral home. They were there within minutes and we were then led to another room while the funeral home prepared to transport my father’s body. They draped an American flag over him.
My only criticism is that it would have been nice to have a cot to sleep in for a family member who wanted to stay the night. I spent the night with my mother and they provided me with a reclining chair that was so uncomfortable that I ended up crawling into bed with her, which comforted us both emotionally, but made it impossible for me to sleep at all.
A nursing facility is like a small village. It begins to stir around 4:30 in the morning as they start their rounds and begin getting residents up. My parents were usually the last to get up, so around 6:30, we started to get visitors as word spread throughout the facility that my father had passed away. I let my mother continue to sleep as I accepted the condolences of numerous staff members and residents. When my mother awakened later in the morning, the stream of visitors continued. I know that medical professionals are taught to not get emotionally invested, but it’s different when the patient lives there. I saw how my father’s death affected the members of this little “village” - from the residents, to nurses, CNA’s, laundresses, housekeepers, cafeteria staff, physical therapists, office staff, activity director, and regular volunteers and visitors.
I know this is more than you were asking for, but thanks for the question. It has helped me to write it.
For those of you who had someone die in hospital, IMO it is something to be avoided if possible. Although our little 20 bed hospital has a palliative room (again, funded by donations) most major hospitals - ironically - are not equipped to deal with death.
Yes, keep this bumped up. It is an important issue.
My first husband was in the hospital when he died.. He'd been in ICU all hooked up, and no chairs for us. They did move him back to a private room, disconnected everything and cleaned him up. This was after I agreed to have the ventilator disconnected. That room had a couch to sleep on, and no other patients.
I wouldn't have even had her brought there but the nursing home had called the ambulance and this was the closest hospital. If I had thought transferring her wouldn't have caused her even more distress I would have.
But as for the room. It was old, had that old smell to it. Just functional, (barely). A small square chalkboard across from the bed with mom's name on it. A bed with a small bedside thing with a drawer. No pictures. A old, old, washroom which was cold and dank and depressing. When I had to use the washroom I went and used the one in the main hospital area. There was a sliding glass door to gain entry to the room. The window looked out on a dirty parking lot. So all in all, quite depressing. To be honest it could have been the Ritz and I wouldn't have noticed. And since my mom was unconscious her whole time there it didn't matter to her.
The staff had very poor communication with me and with each other. One nurse would come in and tell me mom was scheduled to get another morphine shot in a half hour, then 5 min. later a different nurse would walk in and give her morphine. So, I finally stopped asking cause I'd get different answer each time. The night mom died I was talking to the lady at the desk about transferring mom's body to the morgue when the charge nurse came running over saying "oh, did she stop breathing?" Like I said, incompetence!
I do believe you would make an excellent design engineer, or at least an OSHA inspector.
Wherever I go, I am thinking how to make changes or improvements to a room,
a building, etc.
And your desire for better hospitality in any place is always a good thing.
Creating a soothing environment for family as well as the dying person is I think could be challenging, and given that it accompanies a terminal event, it needs to be done right, tactfully, sensitively, comfortably, and safely.
There was no palliative-care room, but thought was given to keeping the roommate otherwise occupied.
We have a new 3 or 4 room hospice in town that was built and runs with donations, it would be wonderful if everyone could have such surroundings in their final days. When you consider that almost 100% of the people who are in long term care will eventually die there having an appropriate, caring spot dedicated to palliative care shouldn't be an afterthought.
And facilities have changed since we started on this journey back in 1999. I think the facilities that are part of a chain have access to more funding than those that are solely owned, or not part of a chain. The chain has a reputation to establish and maintain, and probably a budget for amenities, which smaller facilities don't have.
This state does have beautiful nursing homes but it depends on the city. The city my FILs nursing home has nice new facilties but they are private pay. I think they do have a few medi-cal beds but i would bet good money you have to be private pay for years and then transition to medi-cal. They won’t take people on medi-cal right off the bat. The city I am in is not an affluent city and most nursing home residents are likely on medi-cal. We do have some really nice ALs on my side of town. There’s a nursing home 2 blocks from me in the old hospital but it’s old. It was a hospital in the 50s. Just my person opinion but if you want a NICE nursing home in this state, you need to have money.
From then on, I toured every facility before we placed either Mom or Dad.
I think you need to have deep deep pockets for the hospice house. Or excellent Cadillac insurance. Medicare won’t pay for hospice room & board unless you are actively dying, I think they will pay for 2 weeks max. The one here is lovely from what I have read.
I think free refreshments should be required. When my daughter got intussiception At 6 weeks, our local hospital didn’t even provide me with a meal! Luckily it was a 24 hour stay and then they transferred her to the children’s hospital in the Bay Area which seemed like a 5 star hotel compared to our hospital! They had a library, you could check out books. You could rent movies-the rooms have TVs and VCRs. Someone came to the room shortly after we arrived and gave me a welcome bag with food in it! They are donated by the family of a young woman who lost their daughter in a tragic car accident on highway 50 near Lake Tahoe, their other daughter survived. Anyway this bad had a cup of soup and a granola bar and I cried when they brought it to me. No one had helped me at all at the other hospital. They didnt even listen to me when I said something was very wrong because her stomach was hard and distended! That bag of food was the first meal i’d Had that day. So I know first hand how important it is to have freshments available during a difficult situation.
None of the nursing homes I’ve been in here have had libraries either. No pleasant courtyards. My FILs room had a sliding glass door that opened in to a cement courtyard that had a few metal tables & chairs. No flowers or grass. His grandparents room had a small private patio but there’s nothing on these patios. There is a TV room/lounge/living room but it’s dark, no books. Don’t know if there are magazines. I didn’t see a lounge at FILs facility either, just a dining room that did have ocean views.
these were both very old facilities though. I would expect newer facilties to be more welcoming, not so dark and grim.
If I could change anything when my husbands grandma died, it definitely would have been the lighting in the room, the seating, and refreshments would have been nice. And magazines and a nice lounge.
I believe there were 2 or 3 chairs, and they were comfortable. The room was pleasantly decorated, although I couldn't tell you now what those decorations were.
I did put some silk roses in a vase and placed it in an area where Dad could see it; red was a favorite color for him. I hadn't really thought about décor, just noticed in passing that it was a very pleasant room. The furniture was walnut, in good condition, so it had a bit of an elegant touch.
Oh, and there were two baby grand pianos. I was too out of practice to attempt playing though. But the pianos were positioned so that the music could be heard in the adjoining corridors. It was so soothing.
Another unique situation was logging in all of the resident's/patient's clothing. I marked it, had to leave it at the front desk while it was logged in, and it was then brought to Dad's room. I'd never experienced any other facility logging in the resident's possessions.
When my FIL died, he was alone except for his roommate. If we had known he was going to pass, there wouldn’t have been much room for everyone to gather. His room was clearly designed for one person. The walls were bare except for a religious portrait above the clock that had been left by a previous resident. It wasn’t Jesus, I think it was from the Hindu religion? Anyway......I think there was enough room on his side of the room for 2 folding chairs, 1 on either side of the bed. Standing room for 1-2 smaller people at the foot of the bed.
Basically there’s no set up in the nursing homes here, people to camp out with their loved ones.
I don’t know what I would have changed except maybe the lightening to something soft and calm. The grandparents room I think could have accommodated a recliner since we didn’t have to close the divider curtain and stay on one side of the room.
Like most tvs in medical facilities though, it was mounted on the wall, so anyone watching it had to look upward. This always gave me a neck ache.
Good magazines on various topics (excluding politics) were available in lounges throughout the facility; we could take them to the room and read them, and leave them in either one of the main lounges or a small local lounge. Bookcases were also filled with various novels, etc. All lounges had exterior viewing access.
Windows in each room looking out on courtyards or the exterior of the building were very helpful for relaxation. Private rooms were also the best arrangement. Multiple halls, providing exterior viewing for rooms on both sides of the hall were best. Rooms with no exterior views sucked and were depressing and confining.
Some windows could be opened; others couldn't. Blinds had to be adjusted with changing positions of the sun.
As a visitor, one thing that always appealed to me was the free coffee and tea. It was very calming to have a cup of coffee while visiting my father or mother. One facility had a small "deli" which also provided reasonably priced meals for family.
Bathrooms in each hall made it easy for visitors, especially since the last facility Dad was in was very large, and sometimes a bit complex moving in terms of layout.
Perhaps one of the best and most unique was the closed circuit TV with half a dozen monitors in the entry lounge. From what I could see, each building in the complex was monitored. I was told that a security vehicle patrolled the premises.
The closet was actually an armoire, with ample room for hanging clothes and drawers plus shelving for stored items.
The bathroom was unique; the basin and mirror was in the room; only the toilet and shower facilities were in a private area. I think this made it easier for the residents and nurses to conduct business w/o vision being blocked by corners.
The best facilities had pianos and good activities. Pianos really made a difference. Top notch and very professional therapists were also a helpful element at the last facility. Their professionalism and maturity far exceeded one of the other facilities we had gone to several times, until it deteriorated and was no longer acceptable.
Courtyards with umbrellas, nice landscaping (absent in many places) helped make being outdoors or just watching outdoor activities pleasant and relaxing. One facility bordered on woods. Deer, multiple birds, and sand hill cranes entertained the residents.