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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

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Welcome to the AgingCare forum. Besides getting support, I think you'll get some honest, practical advice/ opinions/ suggestions here to help you.

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.
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Our circumstances are different, but I feel you on the issue of losing patience. It is inevitable - you're making a huge sacrifice with your time, emotions and energy, not to mention dealing with the pain of watching your dad decline. I only know about dementia care second-hand, but it sounds so very difficult. You are bound to lose it sometimes, not only because of the whole situation but because of the specific behaviors of someone with dementia.

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!
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cherokeegrrl54 Dec 2020
Welcome to the forum. What you will find here is a whole bunch of people that are different, but the same. Come and visit anytime. They are the most compassionate and kind people, living thru some hard times trying to take care of loved ones. You will receive good suggestions and help beyond measure.
again, welcome....
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I was a bit impatient with my nutty mom at the drug store the other day. A lady about my age noticed it and asked how old my mom was. I said 90. She said her mom is 84 and every day she gets so impatient she wants to shake her, but the remember she will not be around forever.

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.
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lealonnie1 Dec 2020
Nothin' like a perfect stranger passin' judgment & draggin' out the Old Guilt Card in the drugstore, huh? None of us will be around 'forever', and none of us get to stand on our loved ones' last nerve all day long, either, do they? Hope the stranger can remember THAT!
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Scooby,
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!
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Welcome to the forum. Know that you’re not alone. I, too, am caring for my mother who is in late stage dementia. And she can work my very last nerve. I lose my patience with her on a daily basis because I’m drained and burned out. She’s 86 but has all the actions of a small child. My heart goes out to her because if she was in a nursing home, she’d suffer because no one would tolerate her behavior.

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.
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Scooby, could you expand your profile a little to let us know your age and your father’s age and physical health? You may not be in this position, but we have some new posters who turn out to be relatively young, with a parent in their mid-70s. They can be looking at literally decades of care ahead of them. The ‘golden promise’ is very different when it is going to absorb the rest of the carer’s life.

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.
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Scooby1982 Dec 2020
I updated my profile and thank you for helping me out!
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Scooby, another thing to remember is that someone with dementia probably has no idea how his/her behavior is affecting you.    They're often in their own little world, and really have no insight into the situations they're creating..

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.
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Scooby1982 Dec 2020
Oh my! He’s not that bad yet! Thank you so much for sharing! Katy
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K, you are very welcome here. Basically, only people who are capable of losing patience are allowed. We don't have many Saints. When we find a Saint we intend to fill him or her full of arrows, send him or her to heaven, then pray to them to fix everything for ALL of us for ALL eternity.
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.
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GardenArtist Dec 2020
Alva, I LOVE your humor!
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Welcome to the forum and I'm sorry for the loss of your mom. A lot changes once the wheels of decline are set in motion. I admire your wanting to honor the promise you made to your parents, but like lealonnie commented, I think you get a guilt-free pass should things get beyond what you are able to bear and choose to transition him to a care facility. Often adult children are corralled into making this promise to parents when they are completely ignorant of what the implications are (and we are all ignorant at that point). And, the parents only remember the bad-old icky nursing homes and think this is how they are nowadays. When they ask for the promise they don't ever imagine they will be senile, incontinent, immobile, etc. and that their adult child will have little to no help every day, exhausting them and bringing them a breaking point. Because neither of you really understood what was being asked or promised, you are relieved of this commitment, should you ever choose to change the arrangement. No judgment on whatever path you take. I wish you wisdom and peace in your heart.
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Scooby1982 Dec 2020
Thank you so much! Yes, the old icky nursing homes they grew up with.
when the time comes I will get him round the clock care.
Your words mean a lot! Thank you! Katy
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Welcome!! You have come to the right place. Anyone that has been, or is a caregiver, has lost their patience many times. And if they say they haven't, they are lying! It really is the hardest thing most of us will ever do, and the fact that it's a learn as we go kind of thing, only adds to our frustrations, as we all want to do our best, and we feel bad when we feel we've failed in some way. But we're all human, so cut yourself some slack, and know that you are doing the very best you can, and that's all any of us can do. Also please make sure that you are regularly taking time away from dad to do things that you enjoy. You will find that by getting away and doing some fun things that your patience level will increase, and give you strength for the journey. Even if you have to hire some outside help, so you can get away for a few hours, please do it. Caregiver burnout is very real, and it happens when the caregiver doesn't take time for themselves. You are a sweet son, to want to take care of your dad, I applaud you for that, but just know that there may come a day when him being in your home, might not be the best choice for him, or his safety. So for now, just enjoy whatever time you have left with your dad, and know that you can come here anytime to vent.
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Scooby1982 Dec 2020
Thank you so much as you have helped tremendously.
I have a son and great friends that help me escape at times and it does help! Katy
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Welcome to the forum!!! You are definitely not alone with what you're going through, or with losing your patience with your dad. Dementia has got to be THE hardest thing on earth to deal with. I know. My almost 94 y/o mother suffers from moderate dementia & is also wheelchair bound, but she lives in a Memory Care Assisted Living residence 4 miles away (thank God). She resides with 22 other elders and is beautifully cared for and has activities to occupy her time, 3 hot meals a day and 3 snacks, and it's a win-win situation for all concerned.

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.
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Scooby1982 Dec 2020
Thank you so much for your wisdom! My parents were in an independent senior living but I couldn’t leave my dad there as he is not that bad yet.
So happy I found a safe place to vent. This is a lifesaver!
Katy
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