As I've mentioned before my husband was in the hospital back in October for aspirated pneumonia and UTI that was septic. He had a feeding tube put in at that time. He had a hard time adjusting to not eating. I did feed him comfort food...pudding, apple sauce, etc. Anyway, he went to the hospital again in December for an UTI. They kept him overnight just for observation. After I left in the evening and before I arrived in the morning, he had talked the doctor into letting him eat! He had two big meals while I was gone. I asked the doctor why he was fed, and she said that they explained the risks and he wanted to eat anyway. She continued to say, it was his choice. Since he has been home, he has been eating two meals a day, and in the evening I give him a feeding. Has anyone else had this experience of being able to eat after a feeding tube was placed? I asked my husband if he wanted to risk having aspirated pneumonia again and maybe not surviving or not eating. He chose eating, so that's where we are at this time with that.
Three weeks ago he was in the hospital again just overnight for another UTI. This time it was discovered that he had severe coronary artery disease. This came as a surprise as he has been a runner all his life, has low cholesterol and low blood pressure. Is this a blessing in disguise? Maybe he won't have to go thru the awful final stage of PSP. Feeling sad!
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I’m so sorry that you and your hubby are having such difficult times. I don’t know anything about feeding tubes but I’m sure someone will get back to you about that. I just wanted to reach out and send you a virtual hug. It’s okay to feel sad knowing that some days are better than others. I’m trying to follow my husband’s wishes but it’s still very difficult to deal with at times. He has a Do Not Resuscitate order in place and I find that frightening, but also comforting. I do not want to see him suffer anymore than he already has.
The Hospice wanted my husband to have a PEG fitted 2 years before he finally agreed to it. I told them he still enjoyed his food so didn’t need it and they said he could continue to eat until he started to choke. We didn’t go down that route and he had it fitted when he wasn’t eating enough to keep his body nourished causing other problems, weight loss, constipation, skin breaking down. I did what you do and fed him soft comfort food as well as the liquid food through the PEG. So although he never had full meals once the PEG was fitted, from what the Hospice said, he could have eaten as normal if it was fitted earlier.
The final stage may not be so awful especially if there is no pneumonia or chest infection. The last 11 days of my husband’s life were the most peaceful he had had for 6 years. No pain, no medication, fully aware but peaceful. A morphine pump was available but he indicated he didn’t need it.
I hope your husband’s eventual departure is as peaceful. C was still able to communicate with thumbs and hand squeezing until two days before he left me, when he went into a deep sleep he didn’t wake up from.
How are you doing? I know the hard work you did taking care of Larry by yourself was very wearing. Do you think you're still recovering? I hope you and Diane are still checking in with each other. I imagine you aren't able to see her right now.
Our bodies don't seem to improve with age, unfortunately.
Five months later I am still in recovery. The aging body is not forgiving.
I was thinking this morning I could not take care of him any longer if he were still here. I would have to put him in a home. My body is worn out.
I had to stop taking ibuprofen, Tylenol and aspirin because it was effecting my hearing. I still use them but much less than regularly. I have new and exciting pains almost daily. They come, they go.
Diane and I email each other. Due to the pandemic we opted not to do errands for a while on Fridays.
I am not surprised that you are still in recovery. It takes a while. Maybe you should see your doctor for a check up as soon as it's safe to go to a clinic. I think my health would have been jeopardized if Sandy was still here. I managed as I am in good health and also nine years younger than my husband. The pain I had in my neck and upper body went away when he was gone.
Have you tried topical thc/cbd? There are some good products out there that may take the edge off of the pain. I've found you need to get a 50/50 mix in order for it to be effective. Actually I guess I don't know if it's legal yet in Pennsylvania.
Rest, get outside to garden (which I know you love), epsom salt baths (may provide some relief).
I am doing pretty well. Thankful Sandy isn't here to go through this, although I wish he was here so we could talk it through. My heart goes out to those still in the middle of difficult caring situations and now having to worry about the coronavirus and isolation on top of it.
We had a somewhat similar situation, but he’d been in the hospital for weeks without food. When we got home he began sundowning & hallucinating - very much about food. By the time he tried to eat ( supplementally), it wasn’t long before he began to choke even on a small taste of applesauce . He seems more resigned to the tube now. I also kept checking that he understood the risks of eating, and he did. I’d say go with the eating if he can manage it. Be prepared to do the Heimlich maneuver if at some time he does choke on the food.
My husband chose not to have a feeding tube inserted. He died a peaceful death, it was not traumatic he just lost the desire to eat and faded away. It's a very personal choice but it seems that most sufferers do in fact have a peaceful death after their long struggle with PSP/CBD.
I am sorry you and your husband are going through this. In my opinion, I think it's great that he's able to eat and is enjoying it. And I agree that it's his decision. Food was one of the last few pleasures my husband had. If it causes aspiration pneumonia, as it did with my husband, then you will have to deal with that. My husband didn't have a feeding tube so I can't comment on that.
Sometimes we get these blessings in disguise. Enjoy every day with him as long as you can.
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My father is now at peace from PSP
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Feeding tube dilemma
