Do I let go or keep going?

MarDel0917 · 1:16AM

My SO who is 46yo EOA is on hospice but thus far it has been more of palliative care. This last week has taken a HUGE turn. The week prior he was up and walking around during the day and would be resting/sleeping when I got home after work from about 5pm till bedtime (8pm/9pm). This last Thursday he lost balance and fell when he was with the caregiver. (I know these things are going to happen and i know he is going to loose all mobility, if not i feel he already has) Friday (day after the fall) his caregiver said he was down all day and couldn't even stand. Yesterday Saturday he couldn't walk. He did stand for about 10 mins and then again collapsed. He slept most of the day as well. Sunday he slept in late and again can't walk today. He was more alert today this am while his mom and nephew visited and then has been asleep all afternoon.

As far as eating he is nibbling and cheecking his food. Yesterday he had maybe a quarter of an ensure, he couldn't suck on the straw. I tried feeding it to him with a straw and that was difficult. So I got a medicine syringe and fed him thar way which only lasted maybe 4 rounds and he slept.

This morning I made him a scrambled egg and he had just a few bites with lots of encouragement to keep chewing. I gave him the reminder of his boost and some juice. He was able to drink from the straw (yaaayy!!).

With all that being said is this the end? Do I let him go? Or do I have him suffer and keep pushing to feed him? I want the honest truth. His hospice nurse says im doing a good job and he is doing well. Which i want to yell and scream at them. Because no this isnt normal this is CRAP!!! No one should have to go through this. Especially this youbg. However im sure he is the only one this young he has taken care of.

This all just fu*%ing sucks!!!!!!

We are all in this together. 💜

terei · 1:50AM

All I can say is that when my mom slept all the time, we would not wake her for meals. She had requested that if she could not feed herself that we do NOT hand feed her…we honored her wishes. AD is a terminal disease and it sounds like there is no quality of life here. What would YOU want for yourself if you were going through this? I did not encourage my mom to eat..I sat with her and held her hand.

sandwichone123 · 2:40AM

I have heard of a happy medium for those who really feel the need to push food, and that is to offer food and feed them, but do not persist for more than 20 minutes each mealtime.

SDianeL · 4:22AM

so sorry you are at this point. I continued offering puréed food if he would respond. The next thing that happened was my DH lost the ability to swallow and aspirated. I chose not to treat the pneumonia. I would make the decision that you know your DH would want and that you can live with. Praying for your strength.

Karen711 · 5:05AM

I’m sorry, this is difficult. I am not at this stage with my Wife, but I’ve tended several friends and relatives in their dying process over the years. I think it’s important to ask yourself what he would want. Sometimes the most loving thing to do is the most difficult and goes against the grain. If he is drifting away, help him to go. Offer liquids and food but don’t push it. Let him guide you.
Sending you a hug and strength💜

Maru · 3:20PM

The advice already given is good. I just wanted to remind you of what a normal dying could look like.

In the normal dying process the body begins to shut down before death, sometimes taking several days. The person stops eating and drinking, may no longer produce urine or need to defecate. Most of us don't have foresight so we keep on trying to feed and hydrate our loved ones. When it is someone with dementia this gets complicated by the body forgetting how to swallow. The choice at this point is either let death occur naturally or put in a feeding tube.

elainechem · 4:37PM

Has he been checked for a UTI or another infection? Those things can cause sudden declines which can be recovered from if they are treated for the infection.

Metta · 7:17PM

I have had some similar reflections lately with DH, especially about feeding. Then I asked myself what I would do if DH didn’t want to shower or change clothes. I would help in any way possible. To me, feeding and hydration are another ADL we eventually have to do. DH may not want them or think they are necessary, but they are. Of course I would not force feed him, just as I would not force shower him. Instead, I try to choose his favorite foods, like mashed potatoes or ice cream, and fruits that are sweet and hydrating, his favorite soups, at least while he can swallow.

Do I let go or keep going?

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