The Decision

I still ruminate over the decision. The fact that my mother is spending the last year or maybe days of her life in a memory care unit with strangers and not with me. I still cry over it. I have to go back and remember that my mother made the choices, not knowingly, that got me where I am today. She bought a one bedroom one bathroom condo so people from Up North and relatives wouldn’t stay with her. She made me and my now ex stay in a hotel when we’d come to visit. If I would visit alone, I could stay but if I had company, she say she “wasn’t set up for that,” whatever that meant. She invited her boyfriend, John, over on Wednesdays and Sundays. I don’t know if they stayed together. She didn’t confide in me about that. So when it came time to figure out what to do about me taking care of mom I didn’t know what to do. When she needed full time help, she didn’t want anyone in the condo with her. When she got to assisted living, she wouldn’t let them help her or teach her to use a walker. Much as I tried to set up PT for her and did whatever I could, she didn’t want that. I wish I could come to grips that I am doing the very best that I can for her. I manage her money and go every other day to see her. Sometimes more. I have nurses that go in to see her from Hospice and I am a watchdog at Memory Care. Yesterday I went and helped feed her dinner. Still it haunts me that she’s alone. I can’t seem to escape it. I can’t help but think I’m not doing something right.

How We Cope

QUESTION: I am an only child of my last remaining parent. My mother is 94. I am 64 and just retired. I didn’t think or expect to become a caregiver. It left me in a depression for which I am getting help. But everyday, when I go to visit my mother and do things for her, it hits me so hard that I will eventually be losing a parent and it’s very sad to see her so old and getting age related problems, etc., I find myself worrying 24/7 and unable to enjoy myself and preoccupied with how to handle her issues and how to help her. Any advice will help. Thanks.

WHAT THOSE WHO HAVE BEEN THERE SAY

When My Mother had been diagnosed with Alzheimer’s I knew this would be Our last journey together. While My Heart was breaking inside, I always wore My happy face when attending to Mom’s needs, and I sang old Irish songs, and I recited poetry that Mam learned while at school in the 1930’s and 40’s. Then one day Mother recalled that all Her Friends are gone, naming a few, and I’m the next to go She said. And this is what Mam said to Me…….Yes We must go to make way for the Young, because the Yought must have Their fling………We’ve had Our time, and now that time is Theirs to Live, and to Love and toil as We have done……….THESE FEW LINES EXPLAIN THE CYCLE OF LIFE, and We must accept this is how it must be. After all it is only inevitable that Our Parents will be gone before Us. Mam passed away last June and I am now alone, but Life goes on. It has to. Cherish the time You have, with Your dear Mother and stop worrying and grieving, since You will have plenty time for grieving after Your Mom is gone. Be strong and I wish You and Your dear Mother well.

 

Being a logistical caregiver — marshalling resources for mom — is still caregiving. Don’t let anyone try to convince you otherwise. And ohhhh, people will. Same goes for the crushing pressure to bring mom to your house or move in with her. (bloggers note: this is what others always have guilted me into feeling.) If that’s not for you, that’s fine. (Again, search this forum for accounts of the highs and lows of that game-changing life decision.)

You worked your whole life for this retirement. It is your investment and your reward. Don’t destroy your pysche (and your health) by turning it all over to your mother. Make a clear-eyed evaluation of mom’s “wants” vs mom’s needs. Analyze the needs first. And again, no shame in outsourcing this or that. “Wants” fall into a different tier of decision-making. And the “wants” (hopefully) are an opportunity to choose some things you can do for mom that are mutually enjoyable — and not merely transactional.

Best to you. These are rough years. And draining. And sad, at times. Keep making the effort to not get lost in all this. Your well-being matters, too. So you need to live like your well-being matters. All day, every day. 🙂

Need to Go

I need to go to see Mom today. I don’t feel like it. It takes up time and I’m tired. But it’s Saturday and Saturdays are brutal at the Memory Care. The patients just sit all day and are shuffled from one room to another.

My Mother’s Dementia

I decided to write this blog to help others navigate the very lonely, very complicated world of dealing with a parent’s dementia. There is not much help, both financially and emotionally. I have navigated the waters. I still am today. I never wanted to care for anyone. I didn’t have children particularly because of that. Maybe that’s why this happened. I was always my mother’s caretaker from when I was a small child. She depended on me. Because she didn’t get along with my father, I was her surrogate, her confidante, her caretaker. But it was always selective — when she wanted me. I have learned so much in the past year and have shed more tears than I ever had in my life. I tried to convince myself each day that the woman I visit really isn’t my mother. She is sweet and mostly scared. I feel guilty daily that I don’t have her living with me. That I’m not taking care of her 24/7. There’s so much more to the story. I’m ready to tell it. Perhaps it will help others. Perhaps it will help me.

Mabel Faye’s Story

About three years ago, my mother, who is now 86, started to show signs of dementia. She was hiding some of the signs – she was having trouble signing her name on checks and when we went to shop together, she’d have me write her name when she’d used her credit card.

She knew she was slipping, but didn’t want to alarm anyone. She was in a perpetual state of anxiety and became afraid to be alone – this was an independent woman who loved to be alone. My mom was a teacher, her hobbies were reading – about five books a week at least, murder mysteries was what she loved.

She also loved to exercise. She loved her condo on the beach. She was a lover of life.

About two years ago, Mabel Faye Solomon was diagnosed with vascular dementia, Vascular dementia is the second most common cause of dementia in older people. In mom’s case she was diagnosed with both vascular dementia and Alzheimer’s disease.

Caregiving can become anyone’s reality. It became mine.

I’ve learned so much in the past three years as mom has progressed from being afraid of being alone and not being able to sign checks to transitioning into a memory care unit because now she can’t live on her own.

I’m accepting Mom’s new normal, although it’s difficult every day. I miss the mom that used to go to see theater and movies with me – we loved to do that together and discuss the plays afterwards. Mom was a tap dancer and performed in theater. She was a successful teacher.

Alzheimer’s has robbed mom of her past and her present and definitely her future. Alzheimer’s has robbed me of my mother.

There are no survivors of Alzheimer’s disease.

I visit Mom every day or every other day at the least at Memory Care. We go for walks together (she’s now in a wheelchair) and I sing her the Broadway songs we used to sing together. She doesn’t remember the words, or recognize the songs.

The first question people ask me is, does your mom remember who you are? Yes, mom has told me she’ll never forget me – but she can’t remember most other things – she can’t read her books, or remember her granddaughter’s names or where they live. This educated teacher doesn’t know who is running for president.

My mother was a proud educator and she would be proud that I am helping to educate others about the importance of Alzheimer’s awareness.

I have become Mabel Faye’s voice and her memory – I am #momswarrior.

And I fight every day to be a warrior for every caregiver and every person who has been touched by this disease.

It hurts like hell every day.