Hello All,
My father’s health has been steadily declining for the past four months. He entered the nursing home with my mother about two years ago. He adjusted well and even put on weight. He also participated in many of the activities. He began to have episodes in which he had no appetite and wanted to stay in bed. This happened sometimes when he was home but he would rebound. Well, he is not rebounding.
He has been having trouble swallowing (again, we had observed this at home too). He has been hospitalized twice for aspiration pneumonia and low blood sugar, They have stabilized the blood sugar, but even with physical therapy, he has been unable to swallow even mechanical (chopped up food). He is on puréed food, which he hates, and has lost a lot of weight. He developed C-diff from the antibiotics used to treat the pneumonia and now has a contracted leg from his stay in the hospital.
My four siblings and I had a care meeting with the LTC facility and told them that my father told us that he doesn’t want to eat puréed food anymore and would rather take his chances on pneumonia. They encouraged us to try seasoning his food with his favorite seasonings and that seemed to work for a while, but he is still losing weight and now said he will go on a hunger strike if they continue to serve him that “crap”.
The facility has done quite a bit. He is well-loved there. He has had several rounds with the resident physical therapists trying to get him to swallow correctly. The therapists think it may be residual damage from two massive strokes he had 25 years ago. They have put gravy over the food to make it more palatable. They hand feed him, but he is refusing to eat. They have put some of their most reliable and efficient aids in my parents’ hall. I asked one how long she will be assigned to that hall (they rotate them to different halls after a few weeks), and she said she would be on his hall indefinitely.
We asked at the care meeting if it was time for Hospice to be called and they said no. That was a month ago, and he is worse. We know that this could be my father’s life winding down. He does not want to be sent to the hospital again and has stated that he does not want a feeding tube. My brother just signed a waver stating that my father wants to eat regular food despite the consequences, but today he tried to feed him chopped up food, and he couldn’t swallow it.
It is all so sad to see him wasting away. He is 89 but looks 99. And now my mother will be facing living without him. We, and she, always thought that she would go first because she had more health problems.
I guess, at this point, I am asking for any advice or words of wisdom from anyone who has experienced their loved one dying from eating issues. Is there anything else that can be done? He is not in pain, just weak and fading.
Since this seems to be your dad's choice, hospice is a logical choice. You can ask if there are people at hospice who can help you understand the dying process so you can wrap your head around it and know what to expect. You don't want to thwart your dad's comfort by allowing anyone to call 911 and getting him an ambulance/ feeding tube/ chest compressions if he's ready to go, and knowing what is happening will help you and everyone around you let go. My mthr just went on service on Sept 11, for the second time. I don't think she will recover this time.
Over the years they continued to include in a rehab list a place that was known for being the last place a living person went - patients frequently never left the place alive. Again, over the years, I heard that from more than one person in the medical field. Seriously, I was even warned about that door to a funeral home by an ombudsperson.
I had also collected brochures at the Area Agency on Aging fall expos, so I called them, with a checklist I had made up. And I got a good recommendation from another poster here.
If I had to do it over again, I would only consider the nonprofits, especially the religious hospices.
This is a difficult task; treat yourself to some relaxing activities b/c it can be very stressful as you probably will encounter some (religious or not) that are disappointing.
If you have the time, do something relaxing, something that you really enjoy, to create a good mood before you begin calling, as it can be frustrating and disappointing.
If you need help on what to ask, just post again.
I too, like the idea of a nonprofit, but that is not one of the choices. It looks as if we are going to go with the one suggested by the social worker (for now). My brother and I agree that we don’t want to dither on this. He needs the extra help now.
When I got to the nursing home today, he had already met with the representative. Knowing my brother, I know that he asked her some hard questions. Apparently the hospice rep is also a nurse who trains the hospice workers. She had been coming to the facility for a while before her company even had a contract, meeting with the staff, visiting with patients, and I guess just ingratiating herself with everyone. I asked her how will we know that my father is getting the services that are offered. Someone from my family is there daily, but probably not when they come. She said that my father would be their first patient and that all eyes would definitely be watching to see how this new company handled things.
Thank you so much for reminding me to treat myself gently during this time. Tonight, I think my mother became aware for the first time of my father’s condition. She had a meltdown and screamed and cried. It was very stressful, but I was so glad that I was there to comfort her. I prayed with both of them. When I left, my father had taken a little nourishment, was tucked into a clean bed and was snoring. She was much calmer, was eating a late dinner and watching that excellent PBS series by Ken Burns about the history of country music. I am so thankful I was there to bring that calm, but I am wiped out.
It’s so hard to know what to do, and I would like to start hospice as soon as possible. The social worker at the LTC facility has always been very straight with us and is very good at her job.
See also https://www.nutricia.co.uk/medical-nutrition/
there is probably a USA based version
I don't recall why or how I contacted a religious medical group, but I wasn't pleased with what I was hearing, so I decided to try them out. And I was pleasantly surprised. The compassion from the administrative staff was extraordinary. They even followed up later with a memorial service.
And as to frozen smoothies, they fall in the same category as ice cream, but you can still use it if you only remove a small portion at a time, so it can be eaten before it melts.
TreeArtist, I think one of the reasons Dysphagia isn't discussed by name is b/c of the tendency of medical people to speak in general as opposed to medical terms when dealing with patients and their families. I didn't like that approach, so I researched conditions and tried to elevate the conversation to their level. And than I got much more realistic answers.
I believe your family made a good decision allowing non-pureed foods, as your father obviously is willing to assume the risk. It's a hard call to make because the possibility of pneumonia is very real. My Dad did fine with his refusal (and his Dr. supported him.) He could eat a little "real food" which he enjoyed, but an elderly neighbor of mine did succumb to aspiration pneumonia this way.
I'm glad you're planning to have Hospice in for an evaluation. As others stated, please insist on a referral as soon as possible. Our family didn't understand the concept, nor realize Dad was so close to the end. Thus we ended up not consulting Hospice until the day before he died.
But it was a blessing to have Hospice for our mother, in her last year of life. Hospice can do so much to make the patient more comfortable. Remember you can always change your mind and remove Hospice if you wish. And Hospice will do evals and remove themselves if your father's health improves and he no longer meets their criteria.
BTW, we were advised to select a not-for-profit Hospice. Not sure why, as Medicare covered the cost, but Mom's care by them was excellent, and they added to her quality of life.
I wish you and your family peace during this time.
This is kind of the "devil and the deep blue sea" situation. Neither way is easy, or pleasant.
Your father seems to have decided that he won't eat a dysphagia diet, which is his right. Unfortunately, it means that he will continue to decline.
My father and I discussed this when his dysphagia progressed. He said he wanted to continue to have some "real food" but would eat pureed food as much as he could. Eventually that too became too much for him to handle.
I think you're wise to explore hospice alternatives, as it eventually will come to that. And you'll be prepared. When my father reached that stage, I was ready and transition was seamless. Still, it was difficult to see him deteriorate.
I think you've done everything you can, so please don't feel as though there's something else that can be done. Dysphagia is far more challenging to adapt to than many people realize.
Just enjoy your father for what he used to be, and support him as he battles this probably last battle. And know that you're allowing him to make perhaps the most important decision in his life.
he has a list of five questions that he says everyone should be asked near life’s end.
I think everyone should read this book. Especially baby boomers and all caretakers.
To me, your dad has said he doesn’t want to live if he can’t eat normal food. Perhaps these questions can help him sort this out a bit. Perhaps it can help other members of the family allow him to end his life as he chooses.
Here are the questions. He warns that we sometimes wait too late to ask the questions I’ve also enclosed an interview link that might help.
We need to know:
What is your understanding of where you are and of your illness?
Your fears or worries for the future
Your goals and priorities
What outcomes are unacceptable to you? What are you willing to sacrifice and not?
And later, what would a good day look like?
https://www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/
i just wanted to add that both of my long lived parents had aspiration pneumonia on their death certificates. They didn’t have this choice that your dad has of a tube. I’m not sure what they would have chosen. They were both able to make their own decisions, so my siblings and I would have followed their lead.
There is a poster, Victoria, who has a feeding tube and she has had it for awhile. She says it’s not so bad. But again, that’s your dad’s decision.
I am going to start researching hospice companies. I figure that they could at least bring another set of eyes to the situation. The problem is that when I bring this up, my siblings start talking about hospice horror stories. We are not ready for this.
May Peace be with you.