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.
You cannot be the one and only caregiver anymore. Now there has to be outside help brought in, or the person you're caring for needs to be placed in a care facility/nursing home.
Your sisters are getting the luxury of living away from it, but don't assume they aren't aware of what's going on. Many times in families one sibling is becomes the caregiver because it's convenient for everyone involved. Of course not for the person who gets designated. The siblings will often not inquire too much because they don't want to take any of it on themselves.
You are living in a high-risk situation for elder abuse. Your sisters need to be made aware of this and that you need help. Let them know this or you will be forced to drop the elder off at the ER and they then become a ward of the state. So, if your sisters are looking forward to any kind of inheritance at some point they can kiss it good-bye. If it comes to this for you, the state takes it all.
I would schedule a zoom with your sisters and explain that you're tired, you're angry and it's time to look for a long term care facility. They can then do one of two things...offer to take on the responsibility themselves or they can come into town and help you look for a LTC facility and assist with all the paperwork involved.
What made me feel better about making the decision for my mom was flipping the situation. I would never expect my own daughter to give up her life and work herself to death so that I wouldn't have to go to a facility. I wouldn't want her hating to come into her own home because she dreaded having to bathe me, feed me, change me,...whatever. I could never be that selfish. If I was unable to make decisions for myself, I would want her to help me find a safe clean place to go that was close by so she could visit and check in on me.
Don't feel guilty. Make healthy decisions for you and your parent.
Take care.
"safe, clean place to go".
i think it's sometimes tricky...depending on where one lives, it can be hard to find a "safe, clean place". there are many stories of facilities that are abusive, that drug elderly people; neglect, etc...
i wish us to find good solutions.
in any case, as many have stated on the forum:
if our parents love us, they want us to have our own life, to succeed.
bundle of joy
thank you for telling me your story.
You need to prepare a list of your frustrations and concerns, what is really bothering you. Another list of all the tasks you are doing, or feel you have to do. Then make a list of things someone else can/could do instead of you.
The next step depends on what kind of relationship you have with your sisters. Schedule a meeting and present them with the list. Tell them how you are feeling and ask them what they are willing to do to help YOU. You need help and you have to figure out how to get it.
If that's not feasible, or you don’t trust that your sisters will help, than you need to get some outside help. This might range from therapy for you, to aids to help with your parent, to finding a care facility to place them. Do you have a religious affiliation that you can reach out to for advice? A local Agency on Aging?
Ask yourself what would happen if you got sick or had a breakdown, who cares for Dad then? I realize it is difficult right now to accept an outsider into your home but it might be the best solution right now. I hope you are able to get the vaccine you yourself and your parent, contact your doctor ASAP.
Good luck, and keep in touch. You found this forum so it's a good start.
I currently have a bath aid for him, and that’s a lot of help.
I do worry what I would do if I get sick of my back goes out. I’m sure one of my sisters would come to help. Eventually he might have to go into a facility if he gets bad enough to where I can’t physicaly do it. He has told me he wants to die at my house. Ug!
Dad got his vaccine, and I’m hoping in can get mine in a week or 2. That will help with some added stress.
Thank you you for your advice and support.
hug!!
you wrote:
“One day, the tables will be turned.”
i truly believe that.
courage. and go for life!! we must live our lives too :).
bundleofjoy
EVENTUALLY you are gonna need a break, a permanent one-- or you will go nuts and regret any stuff you say or do. Do your HOMEWORK, soldier !
NOW, soldier !
In my case, I started an email to each one, set it aside and came back now and then to add or edit. Eventually I just left them in the draft folder. I got out most of what I needed to say. I realized sending these would NOT make a difference as they wouldn't recognize or accept anything I had to say and it would likely result in flak back. So, they sit in that folder to this day. I just learned to ignore them and do what needed to be done for mom.
Your case is a little different only in that it doesn't sound like your sisters are interfering, but they also aren't helping much. I would imagine it's difficult to deal with personal care for any man who isn't a husband or son, but for a dad! I really don't think I could have done what you do for my mother. It isn't the reason I chose MC, as there were MANY reasons I couldn't do it (and those 2 clowns wouldn't have been the right way to go!) For those who say they changed our diapers, it isn't anywhere NEAR the same! Some who provide care for parents have never had their own kids, so they don't even have that experience, though it still isn't the same!
I do hope you have access to some of his assets/income so you can hire some help. You DO need ME time. Doing that 24/7 is not doable by one person. Whenever possible, do find time to get out or away from the care, even if it's a half hour for that bike ride! The physical energy for that should help burn off some of the anger. Learn to recognize when that anger is building up and take a breather (obviously not mid-brief change....), even if it's just to step outside or into another room, take some deep breaths, relax your body.
Sympathies to you and all others going through this!
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
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.
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
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.
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.
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.
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.)
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!"
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.
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.