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.
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.
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'.
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!
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.
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 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.
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.
I had never heard such a statement from anybody. But, then again, I respect your candidness, and you sincerely sharing your feelings.
SORRY, for my harsh statement but could not stay without a reaction: I certainly cannot remember how many times I have stared at a star or a cloud, or stared into a corner of a room, wishing I could see a glimps of them to feel in their presence, or could I dare to imagine one of them to talk to in her bones in a cloth bag hanging on a rusty nail too just be sharing the same room, irrespective of its size - 8 by 10 or 38 by 68, since I was 9...