The roller coaster of bouncing back time and time again.
In the 2.5 yrs I have cared for my dad first on hospice and now off hospice, he has creeped slowly to what appeared to be death and back again about 6 times. Has anyone else ever been through this? This is my first time on here. I am exhausted in everyway still jumping through hoops for either passport or medicaid for help. It has been 2 weeks now that my dad has again begun to slow his eating and drinking, sleeps all day and night and has conversations with people not there etc. If he opens his eyes he stares vaguely or at me. He doesn't respond unless I really piss him off. It seems that once again we are wavering on the edge. Yet not. He eats if I feed him only if I did not he would never ask. Same with liquids. His color is still reasonable but he has become distant again. I am so tired emotionally from this not to mention the physical. I have become anxiety laden and heavier and just plain exhausted. Just needed to vent. Thanks.
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The ups and downs are so hard because we prepare ourselves mentally to say goodbye - and then they bounce back. A young (30 yoa) friend of mine said goodbye to her dad THREE TIMES at the hospital only to have him bounce back each time - the emotional toll it took nearly killed her even at her young age! (he finally passed quietly in his sleep without anyone there).
With my Mom, she did not 'follow' the usual path at the end of her life. Being the sort of person I am, I kept a journal and compared it to everything the literature says is supposed to happen at rnd of life. With her, most of it did not. I will tell you that that once she refused to eat and drink any longer, the end was in less than 2 weeks. But Mom had Alzheimer's - not the same as your situation. Also, the morning of Moms death, I held the phone to her ear so she could hear the voice of her favorite person on this Earth, my oldest daughter. She talked to her a long time, she gave her permission to let go. And an hour later, she did - despite hospice saying it would likely be another week.
Good luck to you dear. Try not to worry about the money as worrying will help no one.
jeannegibbs & Lilliput: I do not have the option of hospice at this time I have tried to get him back on but strangely his vitals are not showing as of today that anything is really amiss as far as the end. He has not bounced back all the way however. I used the extra "touch" to try to relax him for what ever choice he was making and it woke him a bit more than the last few weeks but not too much.
He is an advanced heart patient that has exceeded his life expectancy by doctors by 2 years so far which is amazing. He has one open artery as of 2.5 years ago. He is completely bedfast, needing 100% care.
As for respite we get no volunteer services. His particular church although he went there from the 1960s to now only sends a homeade card every few months but nothing more. I have flat out asked for help and have not received even call one. I gave up on the pastor as well, he has not been here in almost a year even after being called. That has been very depressing to see the lack of response. His visitors include his children and one of his younger brothers (the other does not even call me or him to see how he is doing) His close friends have all passed on as well. We have to pay to leave the house at all times. Quite a burden on us but we just go when we can. I wonder at times if we will ever dig ourselves out of the financial hole we have gotten into but I try not to think too much about it as it does not help me stay calm and relaxed .
Hope that isn't too much information! Helps to get it out to someone who understands.
Ishamael gave you some very sound nutritional things you can do to incorporate into your dad's diet. Whenever Mom was ill she just wanted one or two simple things to eat. It might be that the tastebuds no longer respond, or as Ish said, the long periods of inactivity just do not stimulate the appetite.
From your other descriptions it sure sounds like he as at the end of life even if he has moments of bouncing back. The body just knows what it wants.
I would not force food on him. Take advantage of the moments when he is interested in food and drink to fortify his meals as much as you can.
Hospice should be giving your more guidance on end of life issues and what to expect, including nutrition.
You can also benefit from hospice. When they are there take a break or rest. Start contacting friends, family, members of the community, churches, senior programs and ask for volunteers who can give you respite. If you are able, hire someone to come in just to sit with Dad so you can get out.
Good luck...I hope you get some rest.
What is his quality of life when he isn't in one of these downward spirals? What is his chronic condition(s)?
You must have slipped between the cracks, reponse-wise, because people usually respond much quicker.
My own situation is that I am taking (absolutely solo) care of my 105 yo grandmother for 8 years now, beginning with almost a full year in which my mother (RIP) struggled against lung cancer. I am very big on "alternative" nutrition, and even though my grandma is one of the nastiest centenarians imaginable, she still gets the benefit of my ideas and practices. If you googled "top 10 wonder foods" or anything remotely like that, chances are that she is getting most of what you'd find in the various lists. And just as importantly, not getting very much garbage food either.
Anyway, a while ago someone was describing their "sleepy granny" and I volunteered my ideas on homemade blended or pureed "cream of vegetable" soups, and thought I would get some feedback if they tried it out. I figured that with the person having nothing to lose but a little labor, and knowing that the food had "bio-assimilable" minerals up the wazoo, that maybe they would give it a try. Nope, nothing.
IMO, it's pretty obvious - the "Old Folks at Home" have lousy digestion across the board. They don't chew well, and don't produce as much stomach acid and digestive enzymes as they need. So, pureed veg soups, broths, and raw veg drinks are great. I'm sure that the cells of every piece of asparagus, broccoli, carrot, onion, spinach, celery, parsnip, squash, parsley, etc, I used all had the necessary ingredients to sustain life. Which is more than I can say for "Ensure", for example.
Of course, I have no idea what you are currently doing. But those veg sources, plus probiotics (in the form of the right yogurts), essential fatty acids, coconut oil and / or MCT oil, fresh fruits, B complex, adequate C, D, sublingual B-12, etc, etc. might work wonders.
Also, the lymphatic function is being seen as more and more important these days, and it ABSOLUTELY requires for the the body to MOVE. I think in the future as our cell phones become artificially intelligent, they'll remind us every couple of hours to jump up and do a 3 minute circulation-boosting workout. Or have our personal robot give us a lymph-boosting massage. Till then, we have to improvise.
Well, I'm 99% sure this was not the kind of response you expected, but it might be good for a diversion anyway.
Good luck.
I hope it has not kept anyone from their comments since I have not received any.