After a long 9 to 5 day. I just spent the last 4 hours giving my bedridden Mom an enema and watching the poop slowly fall. She hadn't passed stool for 10 days....despite us trying just about every laxative we could find on the shelf.
This is our life now. I know I've been posting here for a few years now but....it's frustrating....everytime I feel like I've got a groove in caring for my Mom....she gets worse...and requires more time to care for.
Like seriously how did we go from... walking and eating slowly. To getting her surgery to having a PEG tube placed last month.
After just 1 week in the hospital for the PEG tube...she has never walked since.
And now her constipation is worse. She has graduated from needing daily laxative....to needing it twice.....to needing an enema.
I hate my life sometimes.
"But let me explain again. I *alone* cannot decide against a medical procedure for my Mom against the will of my father and my sibblings".
To be blunt: So Father has decided to force feed over mother nature's way - why? Does he believe not feeding would kill her?
Would he rather she die of a bowel obstruction?
I don’t miss the bathroom troubles.
I do miss being able to hold a conversation—- yes, even when my parents were too sick to respond, being able to talk to them with them in the room was heaven.
What you are doing is heroic. Someday, when you can’t do it anymore, you will be proud of yourself. You will know you did the most, your best, and you will be glad you did.
As another commenter asked, are you the Lone Ranger? What people don’t realize is that the Lone Ranger had the state of Texas behind him at the time and an assistant. The assistant was much smarter and a greater help than most people gave credit. Yes you do have your wife, but sometimes one needs more help. Even doctors need help.
Your mother is no longer in a position to state her wishes. Is your oath so over riding that can one see whether harm is being done? I know I would not want to be in that state. I’d rather be dead. That isn’t life, just waiting for an arbitrary end.
If she was eating but was unable to feed herself, or required pureed food then feeing her like you would an infant is the way to go.
If she began refusing to eat then placing a feeding tube is NOT euthenasia or you starving her. I am sure your wife can tell you the problems that may arise with food that can not be digested by a body that is shutting down. with a digestive system that is not working properly constipation is a problem. And the problems with fluids that have no where to go because the kidneys are not functioning as they should.
Surgery for older people is difficult enough but even harder for those with dementia.
I'm just tired that's all.
My wife herself is a nurse...and between the 2 of us...everyday we come home....its like working a whole night shift with my Mom.
The last 2 weeks my parents' helper has called in sick.
So even the days my wife is off duty...she still ends up working on my Mom daily.
We both literally just slept 12 hrs straight just now
I never guessed that this would be our married life.
it’s awful how sometimes being kind results in major disadvantages for the one being kind.
you and your wife are in a very difficult situation.
i hope you find good solutions to free yourselves.
we all have a right to live our own lives.
i myself (normally a super happy person), am starting to fume with anger (even more than before). i have siblings who dumped it all on me. i see my siblings thriving with their careers, total peace of mind, zero stress…
as i said previously, i’m starting to look like a grenade.
i wish us freedom.
Not placing a feeding tube is not adding a burdensome treatment.
There are many reasons for choosing to avoid burdonsome treatments - to not prolonging life. Often if the prognosis is very poor, quality of life is extremely poor or the burden of treatment is extremely high.
This of course is a personal/family decision.
I have no idea what stage of Parkinson's Disease your Mother has. It is a life-limiting disease, but like many others, treatment is of course recommended (unless very late stage). No-one would consider NOT treating life-limiting diseases in early-mid stages.
Are you a believer in the 'life at all costs' ethos?
I am not. But I understand many people are.
Not placing a feeding tube when she became incapable of feeding, would have resulted in a slow and gradual death that would have taken 8 to 21 days.
Its a very thin line to cross over the edge to euthanasia and I'm not gonna risk my medical license like that.
So, even if I know the prognosis is poor, I have to go along with what the rest of my family decides.
Now it looks like she requires enemas to pass stool. I dread the day what will happen when her body slows down so much that, not even an enema will work.
I swear ....my grandparents didn't suffer this long winding gradual painful descent to their death. They lived. They got sick for a short time, then died. We mourned, we buried them and moved on. We have nothing but happy memories of our grandparents.
My grand-dad (God bless his soul) chatted with us all from his hospital bed before his passing. And then that was it. I never saw my grand dad struggle to keep living.
But with my own mother.....its draining greiving my mother's decline for so long.
But even if his mother does have some assets, why not use them to pay for nursing home care? I think her husband does NOT have to bankrupt himself in order for his wife to be eligible for Medicaid, but I can't say for sure how that works with married couples.
On the other hand, it sounds more like Exveemon's mother is in her final days, with extensive nursing care needs; this to me sounds like Hospice care is needed.
As for Hospice, again, isn't it the patient who pays for it, not the patient's children or other members of the patient's family? That's another service that should be checked.
I thank God my daughter is an RN who worked in NHs and saw death almost everyday. One lady just laid in bed and stared at the ceiling all day. Could not talk or move a muscle. Only her eyes could move. But her family chose to have a feeding tube placed to keep her alive. Once inserted it takes a Court order to remove it. My daughter said, they should have let her go. So, I am sure she will make the best decision for me when the time comes.
I have followed ur posts I am so sorry that your family has made you the "Knower of all Things". But its much different dealing with patients than your own parent.
(1) euthanasia isn't a thing. Its literally against the oathe. As long as there's a good enough chance a person can live ...you have to do what you can.
So yes when it comes to the PEG tube....yea we had to put it. Which was more medical fees of course.
(2) I am part of a family. I can't force medical decisions. If the rest don't agree...I just have to bite my tongue and watch. Its frustrating yes. So....its not like I can just take her from the house and put her in a hospice. I'm not "that" rich. I still got student loans paying and I'm not yet at the level of a bigshot.
P.s. most people grossly overestimate a doctor's salary.
I appreciate all the "just place her in hospice" advice ...but I can't afford to do that move on my own.
(3) I'm not in the USA. There's no medicaide.
You say there is no money for nursing care. What about Medicaid? Have you looked into applying for it on mom's behalf?
I realize you are a doctor, but even doctors only have 24 hours in a day. If you burn out and break down, then what??? Your mother needs 24/7 care now in SNF environment. Please look into getting it for her.
Wish I could offer you some advice but I have none.
Sending support your way.
Because I am a medical professional....everyone leans on me....but its getting harder and harder to come from the hospital sometimes after 24hr shifts ....and still spend hours upon hours nursing my mother.
We have to turn her every 2 hrs to prevent bed sores...she still ended up with a small sore. I dress it every day to prevent it from getting bigger. We have to care for her PEG tube. She sometimes wets herself and I have to change her. Now the latest problems is apparently her metabolism has slowed down so much ...not even laxatives can remove her stool....so last night I had the wonderful task of giving her an enema watching the stool fall, pulling out some huge gulf ball sized stools.
I didn't even have appetite to eat my wife's cooking after I was done.
I don't even have the energy to do anything else but sleep after I am done.
Taking on a full-time nursing role is a role that many are not capable or willing to do.
If you are both capable & willing, well done.
Just keep in mind nursing concepts such as team-nursing, handover, heiracy/staying within your scope of skill.
Are you part of a nursing team? Or operating as a Lone Ranger?
Also be aware of the dangers of task orientated - where the focus can become micro level eg urine/bowel output, food intake, med management rather the macro/wider care plan view eg 'active treatment' vs 'comfort care'.