I’ll be honest, I’m tired of the smell of pee from an overnight diaper and I’m tired of cleaning up poop from accidents. This is taking a toll on me. I feel anger inside. How do I chill out, cope and just accept it? I know part of it is hormonal, because I fluctuate on my feelings. My sisters have no idea what I’m going through. They get the luxury of living away from all this and that also bothers me.
Burnout is a real concern to caregivers. It may be time to look into options for additional support. Can you parent pay for help? Do you live with them or do they live with you?
Are they eligible for paid aid? Through Veterans Affairs, State or Provincial services? If in the US, can you get help through Medicaid?
Now to hormones, if you are perimenopausal or have gone through menopause (12 months after your last period), you may be helped by HRT. I know for me it has been a godsend. Please do not neglect your own health while providing care to another.
My mother took on the burden of taking her mother (with no care needs) into our home for 25 years, although she blamed it on my father who insisted it was her 'obligation' to do so after her husband died young. My mother's anger and resentment over the situation ruined HER life, my fathers life, my grandmother's life and my childhood. All for feelings of 'obligation' that weren't necessary. Everyone would have been 100% better off had my grandmother been sent to live in her own apartment or off to Skilled Nursing, which is what eventually happened after she was shipped off to another daughter's home and the daughter said NO WAY. Off to Skilled Nursing she went, and she did fine there. Problem solved.
Look into placement for your loved one before you get SO burned out that there is no recuperation from it. Why put yourself through such a thing? You can 'love' your loved one and STILL have him or her placed into a good care management residence and become a visitor instead of a caregiver. Don't let anyone tell you otherwise.
Good luck!
Caregiving takes a toll on all of us so please know you're not alone. We all have our moments. Even if some of it is hormonal, you still have to deal with it. Also, we feel the resentment of watching others whether it be siblings which I don't have as I'm the only child but, it can be extended family living the high life. We often feel like it's not fair and it isn't. Life in general is full of unfairness but, we still feel angst about it.
The best thing I can suggest is learning a physical way of channeling that anger so you can get it out (stuffing it, is never good) in a productive way. We each have what works for us. Sometimes it may be getting into your car and just scream, sometimes it's a good run, other times I've wanted to get a punching bag and give it and me a good workout. Or if talking is more your thing and you have a good friend that is willing to listen, share it with them.
I hope you can find something that will work for "you!"
Thank you for your support.
The anger and resentment feelings are hard to deal with, and I don't have any good answer.
However, I can tell you a small trick that I use to avoid the pee/poop smell. I pray perfume generously in the air as I enter the bathroom. It's a cheap perfume that I got from dollar store but it is strong enough to overshadow the bad smell enough that my nose can't detect it. I also turn on the vent and keep the door open.
I also spray the toilet and the seat with rubbing alcohol to sanitize and deodorize. It works very well.
But IF this were a regular thing, there is no way I would lean on him to handle it. That would be grossly unfair to him.
Anyway, you do NOT have to just chill out and accept this. You can choose to but there is no "have to". If you choose to, try things like deep breathing (not when you're near the scene of the crime, of course).
Have you tried things like limiting liquids past a certain time of night, say 6 PM. Make sure no meds are diuretics that they get at night. Do they sleep through the night and it's all those hours of pee? Maybe not realistic but maybe a diaper change at some point in the middle-ish?
What kind of poop accidents? In the diaper? On the floor? Depending on the situation, could be different advice.
If accidents are happening during the day, maybe planned trips to the bathroom would help cut down on this?
I do not think this is hormonal. Sure, you might be able to handle this better at some moments than others, but I think that's normal. It's a difficult situation that most would find challenging. Give yourself credit for dealing with it AT ALL!
Please do your best to not be bothered by your sisters not knowing what's going on or being part of it. Those feelings, while very common and understandable, do nothing to help you. They are free to make their choice to not be involved and you need to find a way to honor that. Have they been invited to do more and declined?
If this is from dementia, I would seriously consider finding somewhere for her to live as it is unlikely to improve. Or get more help at home so you can have a break and maybe miss out on a diaper change or two while you do something for you to. help recharge your depleted batteries.
I surprise myself sometimes cause I always said I can’t do it when it comes to poop, but then I do it. I’m not happy about it but someone has to. That’s great your husband helped you out, I’m sure mine would too. God bless health care workers!!!
He’s on laculose (laxative) and sometime I have a hard time regulating it.
As far as help from my sisters, 1 isn’t able to travel to help and the other would help if I ask her to travel here if I wanted to go somewhere on a little “vacation”, but with covid right now that ain’t happening.
Thank you for your support.
I would be angry and resentful as well; I think that you are having a normal reaction to your living situation.
I don't think YOU have to change; I think the situation has to change.
Well after my mom died 7 years ago my dad sold his house and purchased a 5th wheel, did a little traveling, but made my home town his base, I guess he chose me. In all actuality I am the one who’s most able to care for him. He recently moved in with us, his health is declining and he can no longer take care of himself.
Thank you for your support.
It may sound corny but it is true.
Everything we have been through, He has been through.
I cannot count the number of times I had no one to turn to but Jesus. Then, I realized I did not need to turn anywhere else anyways because He was all I needed. Joseph a son of Jehovah.
Now, not only will He sooth your anger but will lead you where you can get the proper help. Most times with me, it has been in unusual places in unusual ways.
I speak from decades of service unto Him all over the world in many extremely difficult situations.
1-Buy disposable gloves
2- If getting to the bathroom is hard. Get a bedside commode and place bed side commode liners in them. Walmart and Amazon sell them. I found these to be the best quality. Medline - MDS89664LINER Commode Liners
3-My dad now just stands and uses a urinal to pee. Then I dump and rinse. We have two and change out daily. The one not in use I place 2 denture tabs in overnight to clean. He still has accidental pees in the depends, but having a urinal handy has helped.
4-Get a diaper pale to use during the day, Place a grocery store plastic bag in it. Put soiled depends I have found Tena for men to be the best for dad. For my mom Sams club depends worked great. For dad Tena has been the best for absorbency and leaks
5-Put a lined trash can in the garage, put all soiled disposable items in here. Bagged diaper pale items, disposable pads etc
6- Get some washable and disposable bed pads. Oxyclean does wonders for the washable pads
7- Adult wipes from Sam’s club are great for wipe downs after accidents
8- Desitin, this is a must. Put some between the bottom cheeks, On upper inside of legs and around personal parts to avoid bed/depend rash sores. Dad and I are past the embarrassment stage. The personal parts we do every 3 day unless he has a break out, the daily. The back side cheek area I coat morning and night.
9-For bowel issues dad uses Senna-S, if needed Metamucil in his coffee or juice. We have found the Senna-S plus the Metamucil which his doctor recommended for his chronic constipation has been a great solution, after we did one fleet treatment to get the packed poop out. The Metamucil is a as needed. The senna-S daily.
I hope some of the above help. Once covid is over get some occasional adult care helpers. I had helpers with mom until 4 months before she passed. Dad started needing help 3 months before mom passed after taking to bed for 3 days with a fever.
I plan to get helpers again after covid for some breaks. Make sure to find some alone time daily. There are times after I help dad up the lift and to bed I go downstairs and find comfort sitting in moms chair.
All of the items listed we keep in mom's senior apartment. Amazon sells adult size disposable bath wipes that are great for cleaning up or a sponge off in between showers.
I did find a visiting PRP and changed her insurance. What a Godsend! Basic Labs, xrays, ultrasounds and ekg's are done in mom's apartment.
I have learn to pray on my way to mom's and listen to praise and worship music. These days always go better.
What helps me is to make sure I take time out to do things for myself and having a schedule to work to.
In the morning, I put her on the loo, change the pad and brush her teeth.
I do my gym/yoga session while she is having breakfast.
An hour after breakfast, I put her on the loo so that she can do her business while I have my breakfast. It's important to not wait for them to say they need the toilet. Most days, there are no accidents when I do this. Then I clean her up and put her to bed.
She gets her lunch at around 1 when I change the pad again and put her to sit in the sitting room so she can interact with whoever is watching TV.
At 5pm I put her on the loo again. Change the pad
8pm the same
10pm is change and bedtime.
So yes, when things happen outside of the schedule, I get angry, but I keep telling myself it's not her fault and try my best to calm down. The anger just makes us sick.
You are so right "The anger just makes us sick." Especially, when it is unexpressed in a healthy way - I have a terrible stomach and acid reflux to prove it.
Usually, it does just make "us" sick but I find that people with all types of dementia, can be quite sensitive to our emotions in spite of their inability to process other things where other people don't care how anything affects us.
I too am "Tiredofdementia!"
I'm not understanding at all why you can't change your situation and why you have to take care of him. He has the power to choose who is going to be his caregiver? WHY?
I've never liked the "put up, shut up, offer it up" kind of advice that people love to give caregivers. (Not saying it's only offered here.)
Not just the nastiness and filth but the constant repeating and mindless questions, demands over and over.
They all need to be on a regular schedule like babies everyday but my mom refuses.
She has no interests or hobbies other than sleeping, eating or constantly complaining. Her wish is to be entertained but when family is able to visit she demands they only come when she has slept half the day.
Her poor doctor gets the same questions at her monthly check ins.
Take time for yourself. Caregivers are notorious for giving and giving and giving and neglecting themselves. You need time away to recharge your batteries: 7-9 hours of sleep daily, 3 regular meals, time for your health needs (go see your doctor about those hormones), and to enjoy life with friends and activities.
Would you be able to meet and talk with your sisters. I can’t imagine they would want you in this type of situation. Maybe it’s time to make a change.
Best of luck to you. You need a break.
Our elderly relatives are generally ungrateful and understandably fed up.
It sounds like you are not sharing enough - not the burden or your feelings about it. Maybe time to get some respite? Can anyone step in? Ask your relatives to do it and try being assertive about it - they won't want you to abandon ship because you can't cope any more. If they can't step in, maybe they can fund help.
Good luck! x
If your sisters have no idea of what you're going through, why don't they know. You cannot assume that those on the outside know what you need if you don't tell them. Ask. Can they start coming for a couple months at a time? Can they help pay for in home assistance for a set number of days per month? WHAT can they do to help you ease the burden? They may say you're on your own OR they may offer to help in some way. Ask, don't assume and don't sit back and wait for them to ask you. Have a conference call as soon as possible.
If you get no offer of help, then you need to tell them both what your Plan B is: putting her in a facility or keeping her in your home and continuing as is.
Enlist your sisters to help out financially so you can hire caregivers.
The anger will continue to affect you in every way.
FIRST, you need to know you deserve a quality life.
SECOND, get professional support to work through your feelings.
THIRD, get professional help to learn what your options are in terms of placing your loved one in a care facility. Even if you decide not to do that, you will know what your options are.
“You need to do what you need to do to save yourself.”
i agree.
i hope you’re well!
over here, i’m about to start doing what you wrote above.
new year hugs! :)
bundleofjoy