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Profile picture for ess77 - Elizabeth @ess77

@triciot and all... Yes, you are experiencing one of the multitude of inconveniences we face when we care for a loved one. My precious mother developed Altzheimers in her 60s, after she and my father divorced from a life-long marriage and partnership raising 3 children.
She was a lovely woman, beautiful inside and out, a true lady.

She was a community leader, wife/partner of a successful man, on several state boards, a leader of charitable organizations... She was a very special lady. I lived in the same city as she and we enjoyed sharing our lives. When she began her single life at age 60, I was her strength. She looked to me for support and assistance establishing her new life. As her only daughter and close companion, I did what I was able to help her through this struggle.

Then, as the dementia began raising it's head, I helped her with her daily living. We lived close to each other, I walked my dog every morning to visit her or with her, enjoyed breakfast together before going to work. Eventually, she moved into my home for a short period, after her dementia progressed and it wasn't safe for her to be alone. After she damaged my washing machine, flooded the laundry, almost burned the house down with the stove, drank a bit of plant fertilizer I prepared in a gallon water bottle, and so on, I found her a nice assisted living facility which she loved. She could socialize, be with folks and enjoy activities under supervision.

That arrangement lasted 12 years. She was very healthy. I deteriorated severely during that time as I watched the bright, lovely, precious woman disappear into an Alzheimer's fog and no longer recognize her daughter. My brothers and wives were so busy building their lives, enjoying golf and friends, vacations... they were pleased for me to handle mom's needs. One brother who lived states away was supportive, to his limited ability. So, our family was destroyed by this horrid illness... as so often happens. I was a lone caring for Mother with only my son who lived in another state and was beginning his career and personal life. He was always available, but...

Yes, there are inconveniences. I lost 12+ important years of my life. I was dedicated to my business, but with the caveat Mom's needs came first! She called at work needing help or upset. I left work to help her. She called at 2 am., 2:10 a.m., 2:25 a.m. frightened, scared, crying wanting to come 'home'. I went to work in the morning and handled the business, after getting up, dressed and going to her at 2:30a.m. to calm her for the night.

Yes, there are inconveniences. I lost those years when I surely would have met the person I could spend evenings with rocking on the porch. Or traveling. Or loving. Or enjoying companionship, or...

Yes, there are inconveniences. Yes, there are tragedies. My mother's illness was a tragedy. My life became a tragic story of pain, screaming in the car after visiting her daily on the way home from work, yelling at the universe for allowing her to suffer this way, crying at night alone as I missed my sweet mother and hated what was happening to her and mourned my loss of my dreams!

I watched my dear, precious mother die a long, slow, horrible death of her personality, her thought processes, her bright light inside... I watched her die for 12 slow, agonizing years. I will never recover from that emotional hell.

But, I did get excellent support and guidance from Mayo Clinic physicians and staff, eventually. I did heal. Eventually. Some. Mostly.

You, my dear friend, are blessed to have a husband who can be inconvenienced. Who can hold you when you need a hug. Who can be there for you to enjoy a meal together. Who can advise you when you have questions. You are blessed to be able to help your sister and brother at this time. And, she is blessed to be in a good living arrangement established and happy.

I know you are dealing with enormous challenges. Reach out to the staff and personnel at the facility where she lives. They are experts and can advise if you ask. There are volunteer agencies who offer driving assistance to appointments, grocery shopping, dental visits. There are councils on aging that offer multiple forms of assistance to all in need no matter income. Do your research. Find whatever is available in her city, state to help her and you make both your lives easier.

You are strong. You can do this. You have support. You didn't have to take care of your sister's needs until now, so this is your time to be her and your brother's helper. It is a good thing you are stepping in for her now, while your brother is able to lead and guide you to the resources he's aware can help. Another good thing.

And, you are so smart to reach out to this group and support groups in your community. There were none when Mother was ill. My support circle was quite limited. You have options. Take advantage of them, as you are now on this site!!!! Congratulations for finding us and reaching out.

Now, know you have folks here who have and are walking in your steps, who have experienced much of what you are now feeling. You are not alone.

I pray your journey through this time will be easier as you learn from others and feel the love and support from all of us. Blessings, Elizabeth

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Replies to "@triciot and all... Yes, you are experiencing one of the multitude of inconveniences we face when..."

@ess77 Thank you the information! We cared for my husband’s mother until she passed and then about 5 years later for his aunt who had no children.
The one difference here is my sister is developmentally delayed. She cannot use handicap services like rides and shopping trips or trips to the dentist. She functions somewhere between a 5-8 year old. She cannot handle money or decision making for herself.

This thread was started to discuss similar issues of children or siblings with disabilities.
I’m hoping for sharing with others managing care for children who were born with disabilities.

Sounds like you did a fine job helping your mom, sounds very similar to how we managed care for our older family.