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I joined this forum a couple of years ago, when I became my mom's full time caregiver. Mostly I browse the topics and if it is of interest to me then I will read through. A few I have responded to. Primarily what I have found on this sight is negativity, children that don't like the role they have taken on whether it's from burnout, dislike, overwhelmed. I am not judging, although I have been judged because I have accepted my role as caregiver, and have fully embraced that role and, I have been criticized, told I don't know what I am talking about or that my opinion doesn't count, because I am not full of hatred toward my role or my mother. I just wonder if there is anyone on this forum that doesn't feel that this is such a burden, that truly believes that I have been given a gift and that it's a joy to be with my mom during this time. Friday after 6 years of h*ll physically my mother decided enough was enough, and that she wanted to pass in her own way, not waiting for her disease to take her. We brought her home from the hospital Friday, and the past four days have been full of friends, families, laughter, tears. Watching her face and the joy she receives when people come to see her, just fills my heart. I know this will change and I pray that I have the strength to deal with letting her go, but one thing I will not have are regrets that I wasn't here for her. I treasure every moment I have. Please understand I am not judging, but would really like to hear the positive relationship experience. How do you say goodbye to your best friend? Please keep the negativity to the other questions, there are plenty. Please share any positive experiences with care giving or with end of life and how you get through it all.

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I have moments of joy and happiness with my parents and am grateful to have this time together with them. I posted the other day about how good it was to see the joy on my moms face when I brought my new puppy to see her in the memory care.

To be honest though.. it is not consistent joy (not by a long shot).. just fleeting moments.. which I probably will treasure forever.
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My positive story reflects more on my mom than me. She had a devastating stroke that took away literally every physical capability, and I do mean everything. She couldn’t sit, swallow, speak, or stratch what itched, yet she was mentally completely intact. Everytime I was with her, without exception, she smiled. I always told her a joke and she always laughed. Those who helped us care for her consistently told us what a pleasure she was to them. I’ll never know how she managed to find joy in those circumstances but she somehow did, and she’ll have my eternal admiration for it.
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im having difficulties (what to say) posting, but want to respond.

Me and my mom (&dad) always had a great relationship. as an adult I loved being with her and doing things together!

things aren't so easy anymore, so that's all I can say.
still im there for her in any way I can. I take my responsibilities seriously. she deserves it.

do I complain = guilty
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Thank you all for sharing. I appreciate it. You are right over the past two years it’s change. But I love my mom and would do anything for her. I find it sad that only three people responded. I guess I truly am lucky. Mom is in hospice now and close to the end. I find comfort in joy in the fact that I have continues to have her love and to be able to find joy and happiness in caring for her. I am sorry that offers cmT see this gift as I see it. I don’t think I will post again it is just to sad in this site and don’t see the support unless it’s support to stay angry.
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Odat, I just saw your question. I had some wonderful support when I felt burnt out, and I was able to rest, make adjustments to my schedule, and feel happy to be doing this again. There are times of trouble and needs for questions that this wonderful group has helped people with. Anger is only one part of this journey, and important to acknowledge in order to make decisions and move on.
My aunt was an important part of my growing up, and she was a travel companion for the first 2 years here with me. I still love seeing her enjoy the antics of our young dog. My mom was with my brother's family then.
My burnout came with a year-long serious condition with my husband, and he could no longer help me stay balanced. Happily, he is recovering now that the cause is known and being addressed.
I hope you find the support you need somewhere now that your mom is in hospice.
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Odat, your post is a joy to read. I wish you and your mom peace and serenity in this difficult time.
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My husband has just been dx'd with Vascular Dementia. I knew it was coming as all the signs were there, so no big surprise. 3 years ago we went through Stage IV throat cancer treatment and it seemed as though I had to prepare often to say goodbye.

The stroke last spring was another hurtle. I had to quit my job to stay with him. My co-workers told me I needed to hire *someone* and keep my job.
I told them this. Being with my husband now is more important than the job.
Our time may be limited.

There are days he wakes up and pees a bit in his pants or on the bed. There are days he just sits and stares. But when I smile and hug him, he breaks out in the most beautiful smile ever and tells me he loves me.

People tell me how 'sorry' they are and I am confused. What we still have is a deep love and compassion that may be affected by cancer and the stroke, but it is still there.
I am not sorry.
I am enjoying the time well spent with my husband.

He may not recall this time in the near future. But I can smile knowing we will have wonderful moments.
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In August 2017, The Eclipse was scheduled to go directly over the town that Mom and I live in. So a couple of my cousins from other states came to stay with us so that they could watch the Eclipse. The Sunday prior to the Eclipse, we had a Family Reunion at the nursing home with my Mom. My brother and his family were able to come and some other cousins who lived in our state came also. We rented the Family Dining Room and bought KFC chicken and had cake for dessert.

Mom LOVES family reunions and in the past, she was the one who organized them. Now most of her generation has died and my generation is scattered to different states across the USA.

On the Sunday of the Family Reunion, Mom was alert and oriented and able to talk about the past and look at photos and understand what was being discussed. We had a GREAT TIME! Everyone enjoyed themselves and we were hoping to have a family reunion this year.

Sadly Mom has deteriorated to the point that she does not know who I am and thinks that my brother works in the state we live when in fact he lives a another state.

God gave us a wonderful gift that day of the Family Reunion and I am so glad that my cousins from other states were able to attend. C:--)
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Odat,

I'm sorry you don't feel supported on this forum. It is easy to focus on the negative and moan and complain .. instead of trying to focus on the positive and be grateful for what we do have. (I am often very guilty of that). Someday I will not be able to see my Mom's and Dad's smile or be able to hug them.. and I will long for that.

I try to remind myself to focus on gratitude, enjoy what I can.. but try to control what I focus on. Positive posts like yours are welcome here...I'm glad you are able to enjoy your mom and feel some joy during this very hard time with your Mom.

I believe caregiving and extreme hardships can mold you into a better person .. if you allow them to. I do try to refocus myself to gratitude and positive.. but occasionally I do need a good vent...which I use this forum for as well.

((hugs))
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Hi Odat,
I started a Happy Memory Thread. I felt we come here and share all the difficulties we experience with our LOs, why not some good ones? 

This forums been a God send to me. I'm so afraid I'm doing things wrong and will hurt my Mom somehow. Or I'm a retched person for my frustrations.

But like you, I just love her so much. I thank God He set our lives up in such a way, that I'm the one who can be here with her, now, when SHE needs help.

My Memories Thread was a way to give our LOs some dignity, at a time when we're airing their dirty laundry, so to speak.

Ok so, my Mom is a real pip! One day we were shopping at Wally world (Walmart) and my Mom was riding one of those electric carts.

There were two ignorant women who had their shopping cart on one side of the isle, while they were on the other side looking at make up. Naturally Mom couldn't get by. Mom said excuse me.....they looked right at her and went back to what they were doing. I was in the isle but not near Mom. Momma said it again, still nothing!

Mom began to back up, she then floored it forward hitting their cart out of the way and continued on. They started complaining to her, when Mom held up her ✋ hand and said...."Sorry Hun, that's just the way I roll!"

This lady still got it! Love her!

Thank you for this thread. You and your dear Mom are in my thoughts and prayers.

I'm sorry, but I can't answer your question about how to say goodbye. I'm not there yet. But maybe, if you decide not to leave the forum, you could help some of us get through it when the time comes. 💜💖
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I can't say that I was really a caretaker for my parents. August 13th, 2017 Daddy (76) was out mowing, cutting firewood and doing fine but he passed away in the wee hours of the morning of the 14th while sitting at the dining room table. August 31st, 2017 I could not get ahold of my mom (66)....and I knew something was wrong. I hauled a$$ to her house, two hours away and found her on the floor, awake, still with me but she had suffered a massive stroke. I had her for 44 days til she passed. I was by her side everyday and I am extremely thankful that I had those days with her and she didn't go as suddenly as Daddy did. Is it a happy story? I guess not, but there is genuine comfort in knowing they are together. My cousin said "you were lucky", her mom laid in a bed, not talking or moving for ten years from a stroke. I know what she meant, but her words could have been better chosen. She was a caretaker of her mom for many years, then transitioned to a nursing home. Sometimes I am envious of people who are taking care of their parents. I'll never get to have the little white haired mother raising h*ll. I actually looked forward to and knew my dad would be living with me later in life and now I don't have that in my future anymore. I was an only child, my mother had me early in life so we were more like sisters than mother and daughter. We were a$$holes when we were together! We had fun always and that continues with me and my daughter now. You say goodbye the best way you know how, or are able. There are no rules. Enjoy giving your time to your mom and don't let anyone judge you or make you feel guilty. We all have our own path to walk in life and you have to do it in a way that makes your heart at peace.
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