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.
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'.
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.
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.
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.
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.
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.
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.
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.
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.
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.
"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 get jealous not only of people having healthy parents but in general having family! I find it really hard for instance to be happy at a friends wedding (not that I’ve been able to attend one lately) when I see all the cousins, uncles, aunties, parents, siblings etc around and realise I have none of it. I get jealous even with friends birthdays when I see they have loving family that are there to wish them well and celebrate when I just have myself. It’s super hard!
And as you said instead, I might be cleaning the floor of urine once again or be dealing with poop and working 24/7.
I too have those moments of is this all there is to my life,..
just recently my friends caught up and even though I know I wouldn’t have been able to go, it hurt to not even be invited and to then see photos of them living it up!
I don’t have any advice to give but just to say you are not alone! Plenty of people on this forum in similar situation. And know what you mean also about just getting things kind of in control for things to take a turn again.
The only thing I can say is as someone else has said (and I try remind myself of this),.. one day they will be gone and then we’ll miss having that parent altogether.
Birthday and Weddings just another day on the calendar just like Holidays.
The positive it's good when the "special" day is over .
You mentioned weddings and other special events, have you wondered if they're all happy to be there or just putting on a show?
Keeping a watch on your mother's bowel movements is important. I have learned to never let my mother go more than 2 days without a bowel movement before giving her Milk of Magnesia before bedtime, followed by a cup of (decaf) coffee for breakfast which always works to get things moving again without the side effects of a laxative.
I understand that we all have to make the best decisions for our elderly LO that we can. However, I feel badly for your poor mother being force fed with a PEG tube on top of being unable to pass the waste and getting constant laxatives and an enema to complete the trip.
When and if my mother ever stops eating, I will not admit her to the hospital and have a PEG tube inserted. No way. But that's my decision for my mother. I will instead, call the hospice that she is associated with and have her switched over from (current) palliative care to hospice care.
Pain-free, comfortable, peaceful.
I understand. As a married male that cares for my mother, I get it. Most of the people responding to you just don't get it, and most of their responses can irritate, if not anger you. People in America are quick to point you to some government tax payer funded program, instead of trying to understand the moral and deeply personal decisions you are challenged with. The fact is that most Americans get to a point where they are turned over to the government for care - a practice that is only decades old, not centuries. In this current tine, people are just more cold, self-centered, and self-preserving -- especially in the U.S.
Sonetimes hating the situation that you and your wife are in, needs to be said. It needs to be talked about, and not held in.
Hard conversations need to also be had with the entire family - especially if the majority would like to do as much as possible to keep her needs met, then the workload has to be more balanced among the family.
Hired caregivers can provide some relief but they still need to be vetted, background-checked, supervised, and coached. So when you do all of that, you end up feeling like they aren't much help to the situation either.
I have been on the caregiving road with my mother in our home for almost 10 years, so....I GET IT!
There are moments when you hate the situation, you hate that your loved didn't do X, Y, or Z to keep up their own health, you hate that family look to you for every answer, you hate to come home, you hate that your wife is on this journey with you, you hate that friends and family don't do more besides talk, you hate that the medical community isn't much help, you hate the your loved one has this type of quality of life, you hate that caregivers are often unreliable, you hate that you can't just do what you want to do after a long day.... I GET IT!
I have to do a lot to keep myself encouraged, only to encourage others depending on my care. As a man of faith, part of my daily encouragement is praying daily, reminding myself of how Jesus made sure His mother was taken care of by a disciple before He died for our sins on the cross, walking every morning with my wife, reading my bible, eating healthy, talking to a therapist - letting it all out, and attending a support group of other caregivers.
We are few in number -- men who care for their mothers. But know that you are a special and love-filled person that I admire from afar. Please remember to try and get more balance. You may have to talk to a couselor who can help you think about resources and other ideas to lessen the load on you and your wife - ideas you may have not thought about.
I will keep you in prayer. If you need someone to talk to, you can send me a private message.
Tim
I don't believe that not inserting a Peg-tube is euthanasia in any country. They are not meant to prolong EOL, they're generally used on a short time basis as they have issues on their own. But you know that.
Allowing her poor, sick body to keep on going when she must be miserable--that seems far more unkind than all the medical procedures to 'keep her going'.
Do you ever pass on some of this more gritty parts of CG to other family members who have such strong feelings about her care? I fathom that as they do the care that you do, they will become far more compassionate than they are. Do they just dump it all on you??
As long as you willingly do the CG, nobody will stop you.
Would it be possible for you and DW to take a week long break (leave town completely!) and turn the CG over to the sibs who have such strong opinions.
One bowel blowout and I bet they'd be singing a different tune.
I'm so sorry for you. If you're not in the US I have zero advice as far as moving mom to better FT care.
Jealousy on the other hand is a bit more hostile (by definition) but may be correct and a result of feeling unfairly forced into a situation that you don’t agree with and, in actuality, have sole say in the matter, (along with perhaps your father), as the one who does the work and has the responsibility.
I may not have read enough to know the state of you mother's mind but as I read it your family, who are lay people, are directing their expert.
From your vantage you must tell them with gentle authority that no one person, can manage this without great damage to the caregiver’s health. You wouldn't recommend them to endure this.
Have a pow-wow with everyone there. Before hand make a large calendar, and several slips of paper with their names on them.
Put down the law and telling them that they must help.
Give them the option of picking groups of three days a weeks to come over and care for your mom. If they are many, point out that they may not have their turn to help for pehaps weeks. Tell them that you will teach each and everyone of them how to give care including enema’s to your mom.
Make everyone a copy of the calendar (or do it online) and tell them to only speak to each other to swap days and then to tell you, and you will keep the others informed so there is never a question.
This may shut them the h*ll up.
You tell them that if they bail out they loose, all incorrectly imagined rights, (rights that only you graciously considered), to advise the “expert”.
I understand they are suffering her illness too but they cannot, cannot, and as of this family meeting, will not advise without providing help. Back seat driving is not helpful.
My mother was very sharp minded, although very sadly and understandably persuaded by fear, when she chose chemo after being told that with it she’d live 3 months vs 4 months without it. She went through a kind of what-a-fighter’s h*ll that could only be admired by those who weren’t hands-on caregivers. She suffered terribly.
I know I don't have to tell you…extraordinary measures must be taken to improve life when there is hope that the sufferer will survive a disease, otherwise greater loving mercy must be the choice.
Be the expert. Call in an expert to talk to your family if need be.
As a new doctor, I can’t imagine the pressure you're under, your heartbreak and fatigue. You are being squeezed horribly by a many sided vise. Not only are you being torn apart by your mom’s illness and care, your work, as well as watching your wife suffer, you are also being made crazy by your family’s vocalized input.
Tell your family that heaven knows you don't want to let go of your mom either but if they insist on measures that will prolong your mom's suffering they must help you and your wife.
Suggest to your family to repeat the word Mercy with regard to your mother each night as they wait for sleep. Just that simple two ton word, Mercy.
Ask them how do they see their end days.
Forgive me if I’ve misunderstood your question.
I read this gentleman's profile. He is the youngest of 3 brothers. They are the they, them you asked about.
I feel jealous of my friends parents who can tie their shoes, use a credit card, use a telephone, drive a car, hold a conversation, make a sandwich.
I feel jealous of my friends families that have clear values and direction through community and religion.
I feel jealous of my friends who have lawyers or accountants in the family who helped them to arrange necessary paperwork.
I feel jealous of those who have lawn/yard help, housecleaners and childcare.
I feel jealous of friends of have big, full, established, all-in-one place families who take turns to help out.
I feel jealous of friends who don't have hoarders or mentally ill parents.
I feel jealous of people who take a break from caregiving to get their hair or nails done or buy new clothes.
I feel jealous of friends parents who had clear mind and died of cancer. Or of parents who died quickly of a heart failure.
I have had to stop looking at Facebook because I feel so confused and depressed afterwards. I don't know how to participate without being the biggest Debbie Downer.
I am so sorry you are in this situation. It sounds so difficult. Please know from afar I wish you the best, peace and love.
@saintseal...I hear you. Glad you vented. Some of your poetic??expressions jumped off the page in bold red font as I (we all can relate) endure similar. "I feel jealous of my friends parents who downsized their homes on their own." We wanted to put my Parents in an Independent Living sitch before my Dad passed but my 79 yr old Mom wouldn't go for it. She yelled & cussed saying she was too young. He could've rec'd the care there/easier floorplan & she could've come & gone. (She barely does that now...like hardly ever) I am a Realtor & would be thrilled to purge/get repairs done & list for sale or to make her living nicer. Nope. Not allowed to. Now we keep her there (alone, even though she complains incessantly)..bc less costly than elsewhere as she doesn't require Caregivers yet. Her Doc says she would be kicked out of AL in 2 mins.
"Communicating or thoughtfully passing along their belongings long before they die (My Mom is Hoarder. I try to toss spoiled food & I am met with wrath-I do it anyway).
My NPD-Borderline-Early Onset Mom interrupts, yells, cusses.. embarrasses in public with A-Hole remarks. Then finishes every expression with "I am perfect!" I will not have her meet sig other & my grown Kids say same & re: their future children. "0" friends or hobbies. Complains re: boredom but screams "I don't want friends." I can't even have the cable guy over to replace a cable so she can watch TV in her room... I do have Stepbro with POA & this is GREAT.
My Mom refuses to allow her old housekeeper back or an errand gal once a week or month. I am only one who visits. No one can handle her toxic *shite behaviors. YESSSSSS to: "I feel jealous of friends who don't have hoarders or mentally ill parents." So selfish to live this way.
My Mom struggles to move her body bc she chooses to be sedentary most of the day. Her choice. Not even a walk in her gated community.. Not even for 15 mins. Not for 5 mins. Always picked on my Dad for his running & tennis... He walked up until last couple mos of his life...and was so healthy bc of his passion for exercise, people...music...politics...history....LIFE!
I am praying that my Mom passes peacefully & does not ..keep at this insanity for even.. 5 more yrs... No gratitude for life. She has been a terror for decades..
I could have it so much worse.. God knows what is coming down the pike, but ... I will never live with her. Whatever the circumstances: we do owe it to ourselves/our S.O. + KIDS + G- KIDS to get help for them. I know what I can tolerate. And I will not quit my career or Kids...their future people...for her. My Mom has the $ means to take in help...and make our lives smoother...I will NOT fall for her manipulative antics. I sound heartless...but am not.
***@ Exveemon: get her the Metamucil cookies & Smooth Tea....in copious amounts... PS YOUR life is going to get better, but get some time to YOURSELF.....NOW!
My sister is a high ranked surgeon, chair of her dept, published in pubmed and all that. Last time she had to work 24 hrs straight was as a resident. I can assure you she had nothing left.
The family made the decision, so they should share responsibility for the enemas. It is not like one has to have a md to administer them.