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.
About bowels and digestion, I think that the fact that she no longer gets up is partially to blame for the constipation and the laxative.
Can you introduce more fibrous foods in her diet? Look on the internet for high fiber. I’ve had a lot of success with beans, lentils, watermelon, cabbage, broccoli, etc. I remember some preparations of apples and carrots, as well as white rice and white bread were to be avoided.
Your Mom’s use of laxatives might be the reason for the constipation also. When you have a wee bit of time, google “are laxatives bad for you”. Have you talked to her doctor about her digestive issues?
I admire you. I can not do what you are doing. It takes quite a bit from me just to brush her teeth.
Addressing the issue of siblings, I have three. None were involved in the care of my Mom. In fact they new nothing of her health issues (cateract surgery, hip surgery), and never inquired. I had my hands full, and to be honest, I did not want any interference. The only time I discussed her situation with them was when she died, and I told them about the arrangements. They came to the funeral, and left right after. They never questioned me, and I was able to close the estate with no problem. I'm not sure what kind of relationship I will have with them going forward.
Every time I read a comment from a fellow caregiver, I realize how lucky I was with my mom. Not until the last few days of her life, when her personality changed dramatically (Another TIA combined with a UTI diagnosis), did she ever complain about how I was taking care of her. Not even when it came to the point where I was cleaning her hind end at least three times a day (always accompanied with a new pull-up), and helping her wash her body (She loved it when I used a warm cloth on her back). I would ask all the time, "Mom, do you mind that I, as your son, are so personal with you? Her response was always, "No."
It was hard to see a once vibrant woman, who was active in her field of business right up until age 85, slowly begin to fade as the years passed. She died in January at age 93, just a day after she was admitted to the hospital. I was able to keep her home home right up until then. I always say I was proud to be with her as she completed the journey to the sunset of her life. Boy, do I miss her.
You stating how you miss your mother makes me think about how I will be in those shoes one day. Even though the load is heavy, I keep taking it day by day, treating her as I would like to be treated. Mom gets the best care in my house, and the doctors continue to credit the care with why she has lived more than twice the years they said she would with her condition.
My hat is off to you!
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...
What are your options in terms of care for your mother? Is there a facility where she can go?
I wouldn't say I am jealous of others but I certainly have often wished I could switch places. I really don't know how much worse everything can get or maybe I do from seeing other residents and that thought is very frightening. I understand your wishes.
It sounds like it may be time for placement. You can’t go on like this. I would start exploring the options now (which you may have already done or working on). It can be a long and difficult journey to accomplish the task of placement.
I can’t really say I know how you feel but I did walk that road and it was very difficult. It’s been almost a year since my mom passed and I’m just starting to heal from the trauma of the whole situation.
Good luck.
My sister lives a long way but at least she rang to say Happy Fathers Day.
I tragically lost my dad when I was 12. 😧😧😢😢
Be grateful for the time you had!
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.
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!
I read this gentleman's profile. He is the youngest of 3 brothers. They are the they, them you asked about.
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 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.
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
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 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?