How do you cope?

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How do you cope?

I was given this site by a friend, but I see that it does not have an option for a niece/nephew taking care of aunt/uncle. I have been taking care of my Uncle who is 54 and has down syndrome, and lewy body dementia for almost 4 years now. I do this as a job, which helps me, as well as allows me to help my Mother *her brother*. At one point she and I were alternating 12 hr shifts 7 days a week to keep my Grandpa who has alzheimers from hurting himself or my uncle, or vice versa. It end'ed where Grandpa had to go to a home, and because I have personally worked in care giving with other handicapped people I wanted to help keep my uncle in his own home.
Recently we nearly lost my uncle, he was in the hospital for 5 weeks. I have always loved him, and been close to him. But that scare really brought my heart closer. Sadly now he is starting to deteriorate more, and it is soo hard to deal with at times, I dont want to get on him, or raise my voice but he is just soo stubborn.
I have given up the last 4 years of my life to care for him, at times I have been bitter over it, feeling like I was too young for this *32*, feeling like my Mom depended on me too much!! I also have to deal with my own mental health issues at the same time. It's all soo hard, and I could really use support, and understanding.



You are most welcome here, as you certainly qualify as a family caregiver. I'm sorry that you seem to have things coming at you from all sides...

You are very young, and have a lot of responsibilities on your shoulders. You can't lose sight of your own life. This includes taking time-out for yourself, and keeping things in your life that make you feel happy & fulfilled. When we lose balance in our lives, we all suffer.

I hope that you find this to be a place of support, encouragement, and information. Welcome!


You are definately a

You are definately a caregiver. I can tell by the burden on your shoulders and the sense of responsibility I heard in your post.

We all tell eachother to make sure we take time for ourselves, that it's vital to our physical, spiritual, and mental health but I totally understand NOT being able to. So what do we do when we are stuck and we have people dependent upon us?

I don't know.

What did I do? I went and went and went and used up every spiritual, mental, and emotional resouce I had until one day I was given some not-so-great news and I completely lost it. I cried and cried for days. It was pent up frustration and from the burden of caring for another human being. From being the only one responsible for the life of another person, in my case my dad. This is not the way to go about it and had I reached out for help and/or support prior to this day maybe I wouldn't have had a meltdown but what's done is done.

So please, PLEASE benefit from my experience and get some assistance now before you too go over the edge like I did. There are adult daycare centers, home health agencies that will visit and sit with your uncle (for a fee of course), talk to other family members and see if they are willing to lighten your load and if they are, assign them specific things to do because if you don't they can't help. You have to let people know what it is you need assistance with. Assign someone to be responsible for getting your uncle what he needs such as razors or magazines or whatever else you can think of. Assign someone else to come over for 2 hours in the morning so you can sleep in. Etc. Don't wait until you've gone past the point of needing help. I became a blubbering mess, unable to do anything for days. My brother, finally realizing that I need help, has finally stepped in and he's doing all the heavy lifting now and I'm just FINE with that. I know it's a lot of work and he has a full-time job and a family but I can't do it anymore. Our dad's in SNF but there's still so much to do all the time.

I'm glad you're here!

No one can carry the whole

No one can carry the whole load but for a limited amt of time without cracking up. Each person has a different breaking point. EyerishLass is right when she says do what you can to lessen the load now. Don't wait for a meltdown. Only you know what you are capable of and most of us overestimate that. They use a slogan called Q-tip in substance abuse programs that stands for Quit taking it Personally.

Do not let others or yourself guilt you into more than you can handle. Everything is not your personal responsibility. Set some boundaries. Decide what you can and can not do. These things may change from time to time dependiing on what other obligations you have.

Mom's expectations may be unrealistic and you may have to say no in certain areas. You do the best you can and that is ALL you can do. As your Uncle's condition changes you will need to make changes. Perhaps home health is available, if so take advantage of their services. If your uncle's condition is such that he is combative or non-compliant, you make have to look at institutional care. The choices are never easy, but you have to look at all your options and be open to whatever is available. Take frequent breaks and most importantly be gentle with yourself. These diseases are sometimes too much for professionals, it is certainly something that None of us is going to handle perfectly. One thing about everybody here is We do understand.

How do you deal with the

How do you deal with the anger and frustration? My husband can be so childish and I find myself being a shrew (which is not like me at all). This is purely from my frustration. No matter what I do, he is stubborn and will not even try to do anything to help himself. He has COPD and refuses to stop smoking! He's on oxygen and insists on being able to smoke in the house! He cancels Dr. appointments simply because he doesn't feel like getting out of the house! He is even refusing to shower or eat! I can't help but compare this to when his mother was ill for so many years. His father was her caregiver and would do everything for her to the point of being a lapdog. She was a demanding person and others went along with it. I suppose this is where my frustration comes from because I see him repeating some of his mother's behaviors, when he never did things like this before. I am willing to help him but when he does nothing to help himself, I can't understand this. Am I being too judgemental? When I try to talk to other family members about this.. they want to help, but have their own issues to deal with. I have always been very independant and it is difficult for me to ask for help.

Dear SuperNiece, thank you

Dear SuperNiece, thank you for sharing from your heart. When I read what you wrote, it struck a cord with me, and I want you to know that what you're feeling is absolutely normal and from what I've seen, you're an honorable woman to give of yourself in such a way.

I've been caring for my elderly mother for nearly four years now, and when my mother came to live with us, I had no idea my husband would fall into deep depression making these four years even harder, but what I'm started to recognize is that I'm stronger then I ever thought possible. There are times, like in the last few weeks, I'd like to pull out my hair and cry my eyes out, but I don.'t, but I'm not superwoman either.

Even though I'm new to this site, I was drawn to your message because the title of your message is how we feel, that's why we need each other.

Hi, I'm new to this site. I

Hi, I'm new to this site. I have been the sole family caregiver for my Dad who is now 86 with Parkinson's Dementia for 6 years. He lives with me. I have some CNA's who freelance and help me in my home so I can work a few hours. I would like to know how to deal with the anger and frustration I get from my Dad not listening to me, thinking I'm lying to him and not doing anything for me and one of my caregivers. I have 6 bulging discs in my back and a torn ligament in my wrist. I purchased an electric lift this year but sometimes when he just decides to sit where and whenever he wants it isn't convenient to use. I have PTSD from 25 years in the US Navy and my Dad is a big trigger. I go to church for relief, but otherwise get no help from my brother or friends. I don't have time for myself and when I do plan something, he ruins it by doing something every time. Any suggestions would be welcome. Nursing home is not an option. Thanks.



I understand that while your have been trying to help your family for the last four years you have also given up a very big part of yourself int he process. The daily demands of caregiving are overwhelming on top of the emotional toll you take. There are a ton or resources like this discussion group but also there are caregiver supprot groups you can attend, and there are also programs that can help by sending a professional caregiver a few times a week for a couple of hours to give you the break you deserve. I helped provided care for my great grandmother for several years, she had AD. She passed on New years Eve. I have witnessed the stress burden that can come from caregiving. You really need to take of yourself despite how impossible it might seem.

I am also a doctoral student and my passion for caregiving has led me to conduct research on caregivers. If you are 18 years or older and identify as Latino(a)/Hispanic, and are a caregiver of a person with dementia or dementia related disorder, please click on the link below and complete my survey. This survey is looking at the experiences of Latino caregivers. Also if you know someone that meets these criteria please forward this to them.