Hello All,
I've just joined this group as I am trying to find others who are going through what I currently am.
My Mother passed last year so I moved my Father in with me. He has dementia and scoots around in a wheel chair.
It is so difficult at times but I promised both my parents I would not put them in an Assisted living home.
I'm a retired educator and I thought I would have more patience, however, at times I lose it. I then feel so awful and I beat myself up.
Just looking for support from others who understand.
Thanks for reading,
K
Hindsight is 20/20 isn't it? Making a promise to always care for your LO or promising that you'll always be there for them are both promises you can keep. Promising not to place your LO in a care facility not so much. The time may come when you have no option, I hope not.
"Losing it" is a common caregiver reaction when our LO's behavior gets difficult. Don't beat yourself up for it but try to understand your dad's behavior. I wish you well.
I don't have great advice. When I feel myself getting to that point, I try to walk away for a few minutes. Taking it out on my mom makes me feel even worse than whatever was annoying me before. All that said, make sure that you DO have an outlet for your stress and impatience, otherwise it will build up to a point where it will become unmanageable. (That's kind of where I am right now - eek.)
Often, we are made to feel guilty (by others or by ourselves) about not being strong, graceful versions of ourselves while caregiving. Like caregiving is only supposed to be a noble act performed by brave, resilient, resourceful people doing it out of some theoretical familial duty. But you know what? It's way messier than that. When people comment on how I'm such a good daughter to be doing this, etc, my thought is always "well I guess my reward is in heaven" - because it sure ain't here at the moment. It's OK to have feelings of impatience, boredom, anger or resentment alongside your feelings of deep love and care for your parent.
I'm also a new caregiver and new to the forum, and I'm already finding comfort in seeing that we all share many of the same challenges and frustrations. I hope you are too! Hang in there!
again, welcome....
So it was kind of a kind rebuke to me and it made me think At the same time I wondered if she or anyone spent a day with my mom if they could remain patient.
My patience gets tested daily. But I am not a patient person.
It helps to have friends here on aging care who tell me all the time how patient
I have been. This year, I am once again going to send them blinders for Christmas. Humor helps me.
The action I take just before I lose it is to leave the room, or go out the front door, even in the cold.
Your Dad cannot read your mind. Perhaps your thoughts are a bit worse than your actions towards him?
You have taken the first step towards having more patience, and that is to become aware of your stressors. Then think of all your care giving buddies on here, struggling with the same.
We will be thinking of you!
I pray a lot. I mean A LOT. On a daily basis, I ask God for strength for that day. And each day, I pray that God takes her home. She has no joy or happiness. All her friends, siblings, and love ones have passed on. And add in dementia and not being able to recognize family, makes it even worse. She suffers and I suffer while caring for her and watching her die slowly.
Wish my sisters could help me care for her, but we live states away from each other. And so, for now I do my best and try to be empathetic. Dementia is the worse disease I’ve ever seen because it’s slow, gradual, and draining.
Be encouraged and know that you’re not alone. Use this forum to vent or get advice. Big virtual hug to you.
The advice about ‘care for’ but not necessarily ‘care in home’ is valid at any age. Your father may become a 'two person lift', incontinent, immobile, not able to feed himself, and needing round-the-clock supervision. Don't box yourself into the 'golden promise' now - it could make you go on too long before you realise that after it has killed you, your father will need to go into a care facility anyway.
I think my worst experience was actually in a hospital, recovering from an emergency appendectomy. The second woman with whom I had to share a room was unstable, suffering from dementia, very outspoken and completely unaware or concerned about her behavior.
She put the tv on loud, but never listened b/c she was talking to everyone who came in, demanding attention. She ordered and sent back multiple meals (3 or 4 if I remember correctly), chewing out the person who delivered each one and claiming the order wasn't filled correctly.
She bragged to one of the staff (I don't remember if it was a nurse, or a therapist) that she was a "hottie" in her youngers days, had an ample bosom, and opened her gown to affirm that determination.
She pulled back the curtain separating us, hung down on the bed (but didn't fall out) and peeked over and stared at me. I'd get up and shut the curtain, she'd pull it open again.
I asked for a room change but my nurse told me it wasn't possible. So after some thought, I called for her to come and remove the IV. I explained I couldn't rest and heal or even get any sleep with all that racket, and was leaving AMA, as soon as the IV was out! So my nurse spent the next hour or so moving patients and eventually I was placed in with another patient, who didn't yell almost constantly or strip to display her assets.
I can't imagine how anyone could deal with that kind of behavior on a short or long term basis.
Who do you know that you love and live with/have lived with, that you haven't lost patience with? My poor partner of 35 years has learned one thing for sure--he knows a look in my eyes that means he needs to start running. At age 80 he needs a head start these days.
Please try to have a little patience with YOURSELF. You need a little love here for what you are attempting. I will ask you only to know to recognize your limitations. Promises are lovely. We all mean to keep them when we make them. But life has a way of inserting itself in ways that cannot be denied.
Some day when things aren't bad or good or anything, just sit down next to Dad and say "I hope you know I love you. It bothers me that sometimes I am impatient. I need you to know I care about you, and I am trying hard to be all you need me to be. Forgive me when it isn't good enough. And just always remember I love you."
I have never done this care. I was a nurse and I loved it, but like I always say, 8 hours and then 16 hours off. Only worked 3 days a week at the end. Tons of vacation, good paychecks. Made it so simple to love it. I wouldn't be up to 24/7 care; I know that I am not that good. I have so very much admiration for those who try.
You are very welcome here. Sometimes it is a good place just to scroll down to Discussions and create a thread where we just VENT about things, no questions involved. Wishing the best for you and for your Dad.
when the time comes I will get him round the clock care.
Your words mean a lot! Thank you! Katy
I have a son and great friends that help me escape at times and it does help! Katy
Making such a promise to your parents isn't wise because things change, often dramatically, when dementia is present. You may reach a point where at home care becomes impossible, so if that happens, don't feel 'guilty' about placement. We can only do SO much, as human beings, versus care homes which employ teams of caregivers who work in 3- 8 hour shifts to accomplish what you alone are trying to do.
That said, it's hard to have patience when a person is asking the same question 100x, and you've answered it 100x, and they ask it again. I think the key is to find down time for YOURSELF where you're not care giving at all. Where you're devoted to YOU time and only focused on yourself. Whether it's reading a book or taking a bath or talking on the phone, it will recharge your depleted battery and give you some extra patience. If necessary, hire some in home help for a few hours a day to give you that needed time off to recharge.
If you find that you're losing your cool too often, you're better off placing your dad than allowing that atmosphere to continue.
Here is a link to a good article on the topic:
https://www.caregiver.org/dementia-caregiving-and-controlling-frustration
I know that I could NEVER have the patience or inner fortitude that's necessary to care for my mother at home, and that's why I don't. We'd be at each other's throats all day long and the atmosphere here would be horrible. Know yourself, know your limits, your capabilities, and give yourself some grace, too. You're not perfect, and nobody expects you to be. I am sure you are doing the best you can.......just recognize if it's getting to be TOO much for you, and take the appropriate steps. You don't want to become a statistic like many caregivers do........where WE die before the elder due to stress!
Wishing you the best of luck with a tough situation! Sending you a big hug & a prayer for peace.
So happy I found a safe place to vent. This is a lifesaver!
Katy