I actually REALLY enjoy taking care of my grandma. If she is lashing out there is a reason for it and I just cajole her out of it. I kinda wonder if the reason so many people are struggling with being care providers is that they cant let go of who the person was and their childhood resentments. I NEVER EVER argue with grandma because nobody actually wins an argument with a dementia patient. She is always right but I still get things done my way by working around her known triggers. Maybe its because most people come to places like this when there are issues but I feel like many are told not to be a caregiver on here and to just find a home. Caregiving can be a totally fulfilling experience and yes there are often frustrations but heck I can say the same about raising children. Being a caregiver isn't for people that have to be right and in control all the time, you have to be flexible understanding and extremely empathetic. There is NO nursing home that can provide care better than me and all that nursing home staff is divided among a ton of patients meaning each one only gets very few hours a day of direct care time. I was a CNA in a nursing home there is ZERO time for the type of one on one I do here. BTW, I've been doing this with her in my home with a husband AND children for almost 3 years 24/7 with occasional day aides.

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Hi Chrissy,
It's nice to hear an alternative voice, but you have to consider that you are in a different position than most here. You have training, support, and the means to occasionally bring in respite. No one can deny that one on one care is the best care, but for those without resources and the support of others, caregiving can be a long and exhausting process. I think those that warn against it here are trying to send the message that it's best to enter into this phase of life with "eyes wide open."
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Reply to onlychild22
ChrissyB Dec 10, 2018
To me the direct caregiving is the easy part, dealing with other family members and the hospice staff has been the
Thats great that you're having a positive experience. But I think you may need to look a bit deeper to understand folks frustration. I think that perhaps in many
families there is a designated caregiver, that parents and sibs exploit. It becomes
very apparent when parents start to age as caregiving duties can go through roof.

Some parents are financially exploitive as well as demanding and narcissistic. There aren't many good memories to begin with. And then relatives run off to leave all the round the clock work to one family member (or they're an only child to begin with) . Same folks (relatives and "friends") also want full input about care decisions as well as maximum inheritance left after parent passes.

They're often the ones who will berate the caregiver who hasn't had a real vacation in years, but themselves take many expensive vacations throughout the year. They want to skimp in spending for Mom or Dad, but want them provided with excellent care from caregiving sibs pocket and also time. Some designated caregivers are also the family scapegoat and de facto family slave, and besides walking away, have little to no control over this dynamic.

Ironically, while you don't have control over your Nana's dementia and related moods, you appear to have far far greater control over how, when and how much
to spend on your Gran's care. Many of us on here have the workload without
much control over decisions or outcome. Or if we make a decision we're immediately questioned, outright harassed or manipulated to make a different less
sound but "funner" decision.

Not having control over moods, mobility, incontinence, rising medical costs, difficulties with transportation, memory problems, poor organizing/hoarding, etc is a given. Everyone deals with that, can get exhausted, but somehow deals. It's the other stuff, intrusive relatives who want to micromanage, help themselves to money earmarked for care, without offering any help, abusive or narcissistic parents who are getting worse, toxic family drama, parents who are spendthrifts
but expect access to expensive care. Substandard care, scam artists who target elderly, etc etc. All very very time consuming and energy draining issues to contend with. Added on top of the necessary demands of care.

This is the loss of control that it appears many on here are frustrated with. In fact,
I think this forum would be totally different place without the above issues being so common.
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Reply to bettina

Hi Chrissy,
I wish I could be counted as one who adores caretaking (even though I enjoyed my 40 year career as a nurse).

I think it makes a HUGE difference because you are her granddaughter and not her daughter. You have youth on your side. Many of us are senior citizens trying to care for our very elderly folks, when we have physical ailments that greatly impact our caregiving.
One of the members on this board is in her 80's and her mom is like 106!
In my case, 40 years of nursing has ruined my back. My mom will be 96 in January and needs help getting up and down into a chair, toilet, bed, and have all physical care done for her. I was one lift away from a herniated disc. It was not worth me being incapacitated for the next 25 years just to keep her home. We also faced eviction from the landlord, as she was prone to screaming at the top of her lungs at 2am.

Given that your granny is "manageable", it's best that she be taken care of by family in a home setting. I hope that situation never changes for both of you.
But please don't feel you've failed if, as the dementia progresses to the end stages, you can no longer keep her with you.

It's also wonderful that you have a great relationship with g'ma. Many of us were not that lucky.
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Reply to SueC1957

I am glad you are finding looking after your grandmother to be a fulfilling experience. You are lucky too to have training in care giving. I am just guessing that you are likely at least 40 - 50 years younger than your grandmother too.

It can be quite a different situation if the caregiver is already a senior either the child or spouse of the person needing care, who may be feeling the impact of aging themselves. Or have to work outside of the home in order to provide an income, healthcare coverage and a secure retirement for themselves.
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Reply to Tothill

So happy for you, as you have found your calling.
Thank you for sharing the positive outlook you have!
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Reply to Sendhelp
ChrissyB Dec 10, 2018
I'm actually just looking for others who feel the same way. Honestly Ive been starting to feel as if there is something wrong with me that I enjoy my current role. Thank you for your response, I skip over answering questions many times because i feel like my outlook isnt the norm.
I do not regret it. It is the most trying and excruciating think my human flesh has yet endured. But I would do it all over again.
Because I see the change for the better it is making me. It's like we are prize fighters. And we are training for that big fight. Each day of training we punch better, we duck at the right time, we can run farther, we can withstand that blow to our face. We can see the great fighter we are becoming and will one day get those golden gloves.
Care giving is a difficult labor of love and only the strong survive it.
All my strength comes from the Lord.
It turns us into better or bitter people, we can choose.
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Reply to smeshque
Rosses003 Dec 12, 2018
Absolutely on point! specially “it turns us into better or bitter people”; we may not be able to control all we go through as caregivers, but we can control the outcome, or the effect it has in our journey as human beings.
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I enjoy caring for people in general, & have worked with handicapped children or confused elderly throughout my life. But I dislike caring for my own mother now, mostly cuz of the scary upbringing I had. (So many bad memories have caused flashbacks). I've chosen to have "low contact" with her, to avoid the panic attacks & nightmares.
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Reply to Tiger55

I recently heard a professional say that one of the main reasons why we (caregivers or just relatives of an elderly) struggle so much communicating and interacting with our elders is because we cannot accept that they are not and will never be the same person we used to know. It is like we were forcing them to stay young.

As weird as that may sound, it makes a lot of sense. And I would actually add, we want to force them to be healthy, mind and body! So both parts live constantly frustrated because we want them to be able, capable and nice, while they on top of having to deal with their generalized decay, have to deal with us not accepting their current situation.

That actually made me think a lot. And I will say this journey is the most in depth, painful and also fulfilling learning process I’ve faced in life. I have learned so much about myself and about my mom, actually about life. I also watch Teepa videos and more important than that, I constantly try to put myself in my mom’s shoes.

Now, by the same token, I think we need to remember that every situation is different. For example, it is very different to take care of someone that is perfectly mobile than to take care of someone that needs assistance for everything, at all times. It is also different to take care of an stranger (a patient if you are a nurse for example, or even a friend) than to take care of your own mother, who may be narcissistic, or bipolar, or who constantly puts you down (before aging, and worse after aging), or your father who is simply emotionally abusive and always mad, or having to quit your job having no other income, vs being able to rely on your family economically and morally. Or worse! Not being able to quit your job while your relative needs you 24/7...I mean, there are endless examples of plenty of situations where caregiving is simply a heavy and complicated challenge.

Personally, I have never and will never regret having changed so much of my life and of who and how I used to be to care for my mom. That gives me something priceless: peace in my heart and mind. But I will never say caregiving is easy and something to look forward to.

Im very glad you have found in caregiving the occupation that makes you absolutely happy. Good for you and your family, specially your grandma, because I agree with you that no one like someone that loves you to care for you. I will also keep going as long as I can.

I’d say that aging is not easy, and by default, caregiving isn’t either. We need to wear a heavy coat of patience and love!
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Reply to Rosses003
Birdman Dec 11, 2018
I think in regards to sundowner syndrome, inmobility is a blessing in disguise. They can get confused, but they can't wander away. Gives you at least a bit of security at night.
Lucky Grandma :) 💖

Long may it continue to work so well for both of you.
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Reply to Countrymouse

What a beautiful story.

You are right, we all tend to direct posters to facilities and they are not the optimum choice. For some of us they are the only choice.

I wish that my relationship with my parents was such that I could be a solution, however, it is not meant to be.

You are an amazing woman, who is giving 4 generations a seriously awesome role model. There is nothing wrong with being happy and contented in your circumstances, it is a true gift from The Lord to have that.

Continue to love what you're doing and please post some of your frustration beating strategies for others to benefit by your precious heart.

My doctor told me to have fun with Alzheimer's, he said that I could be someone new everyday because my dad wouldn't remember that I told him I was an astronaut yesterday, so embellish and find the fun. You have made me see this is entirely possible.
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Reply to Isthisrealyreal

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