Becoming Mother

great grandma and grace

Sometimes I would love to be the daughter again. Even now after five years, it still crosses my mind to pick up the phone to share good news with Mom when it happens. I still pause and remember – “Oh ya, that can’t happen anymore.” When I am worried, when I need some perspective or when I am just feeling small and vulnerable, how great it would be to hear her say, “You’re doing great! It’s going to be ok. Everything will work out. I’m praying for you. I am proud of you….and ….I love you.” I miss that! I think for me that is the biggest loss I experience because of this disease.”

To read the rest of Becoming Mother  Visit: http://www.mymotherscaregiver.com/blog.php

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A Visitor’s Guide

 senior hands

Whether it is a parent, and old friend or a spouse, visiting someone you love with dementia can be difficult. People don’t know what to say or do. They feel uncertain and embarrassed. Some people just disappear all together. The following tips for making visits easier comes from Ryleysforum. I’m sure you’ll find her advice helpful. Enjoy! …

Read the rest of A Visitor’s Guide by clicking the link below:

http://www.mymotherscaregiver.com/blog.php

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A Christmas Healing

christmas tree

Read my latest blog post: A Christmas Healing at: http://www.mymotherscaregiver.com/blog.php

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My Mother’s Caregiver’s Relocation

sharon-and-mom

Hello Everyone,

I’m so glad that you are here sharing the journey with me.

For three years I have been sharing both my heart and little bits of information I have learned to help navigate the murky seas of dementia and care giving. All this time I have enjoyed the free web space here on WordPress and have been extremely grateful for it.

However, with the benefit of paying nothing comes some disadvantages.

One, there is a great deal of content on this site. If for any reason this page was to disappear, I would be hard pressed to find and reproduce three entire years of content, web links and resources.

Secondly, WordPress has the right (it is their web space – not mine) to show advertising on this page. I do not have any say or input on the advertising that is shown on here – and yet by being on my space it is implied that I endorse services, websites, content that I have not even seen. I am simply not comfortable with that – especially since often seniors are vulnerable to rip off scams.

So, with these reasons in mind, My Mother’s Caregiver now exists on our own stand-alone website at www.mymotherscaregiver.com. If you have stumbled onto this blog – please give one more click and find all the same information, blog posts and resources in our new location. I am working away at updating broken links and information so I can help you in your journey as much as possible. If you would like to sponsor this site and have your logo displayed, please contact me. I would be most grateful. Thanks for being part of this great community of care givers.

TO VIEW MY NEWEST BLOG POST: “The Pleasure of Remembering”go to: http://www.mymotherscaregiver.com/blog.php

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Some Days

 Love-In-The-Center

Some days, I can forget about the loss, beat back the longing to curl up beside my mommy and be the daughter and not the parent. Some days, when we visit we can just plain connect. One human to another.

Yesterday was one of those visits. I arrived at the Long Term Care home to find Mom awake and alert. Since much of her conversational skills are gone, talking about any one topic for more than a sentence at a time is difficult. But yesterday, there was a book.

The book on the table was three stories merged into one book with a scattering of drawings throughout. First it was pictures of lions and jungle animals, second of historical black and white photos of the Rockefeller family and finally drawings of people riding horses and carriages.  Since reading the book wasn’t a practical option, we started making up our own stories – silly stories at that.

In that moment, I was able to find her, connect with her. It was nice.

There are days, just like you, that I really wish this long journey could be over. I wish that Mom could be freed from this body bogged down by this horrible disease.

But yesterday, I was grateful.

“No Mom, you can’t remember your grandchildren, what you had for lunch or very much about me, we still can share the love of two people who share a beautiful history together.

Even if one of them doesn’t remember it.”

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Less Expectations

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A very lovely relative of mine makes the long drive several times a year to visit my Mom. I’m always happy to hear she is coming – even though I’m not usually there to participate. It feels so right to know people who really “know” the whole Mom are spending time with her, that she is remembered and not totally lost. Her emails and conversations with me before and after her visits are always so encouraging.

After this time, she writes, “As always, I enjoyed the visit. And keep one thing in mind – it’s much easier for me than for any of her children, since I come with no expectations, and no hurt if she doesn’t know me or doesn’t engage. I do fully “get” that piece!”

She so nailed it! Even when we love them, even when the visits are going well, even when there is not a crisis, visiting is hard for children and spouses.

It’s why I seem to be able to finish every single dish in the sink, fold every towel in the dryer and reply to the most redundant email before I can get myself out the door to see her some days. (And some days are better than others…. as you know.) It hurts to see her live like this. It hurts to lose your mother a little more every day.

No matter how deeply I bury them, mask them or rationalize them away, I too have expectations of my Mom. I so want to be known, engaged, loved, mothered and remembered. The loss lives every day under the surface, even when I don’t acknowledge it.

But, Mom and I do have good visits most of the time – but the best ones happen when I too come with only one expectation and that is to make a connection. Some days those connections are more complete than others. Some days that connection is full conversations, laughing, dancing and singing. Other days, it is simply the knowledge that we held hands and that possibly I was able to bring a little comfort and dignity to her on a difficult day.

Those connections, no matter how difficult are a beautiful gift for which I am truly grateful.

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Amazing Grace

 

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Dear Mom,

Well, I just wanted to write to tell you that you became a great grandmother again. Little Grace came into the world on Mother’s Day morning making me a grandmother for the first time and I am certain now I will never be the same!

It makes me a little sad that I can’t share this experience with you fully, I am not sure how many times I’ve told you my daughter (your grand daughter) is pregnant – lots anyways. At this point although you recognize my kids, you can’t seem to make sense of who everyone is anymore…but that’s ok.

Still, though I am happy. Becoming a grandmother has made me remember things I had almost forgotten about you. As I come alongside and support my grown daughter, stories of you come flooding back. I remember how you loved, encouraged and took care of me and everything so I could just learn how to nurse the baby and get my confidence. You were a great mom to me. You are a great mom to me – even as you slip away.

I am so thankful for you!

Love you,

Sharon xo

 

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The Medication Question?

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There’s a lot of things being written and shared in the news about seniors and the medications they are taking in long term care. It is hard to know what is true and what is not?

As I have mentioned in our story, three and a half years ago when my mom was first hospitalized, she was living the “dementia” story: fighting delirium, paranoid, hallucinating, strapped to an acute care bed and taking a collection of drugs I didn’t understand. We had no family doctor, no diagnoses and no hope.

As a partner in care, one of the areas where I have felt the most powerless and uniformed is surrounding my mother’s medication and to make things worse, I just have click on Google news to find statements like this from the Toronto Star:

Ontario nursing homes are drugging helpless seniors at an alarming rate with powerful antipsychotic drugs, despite warnings that the medications can kill elderly patients suffering from dementia. A Star investigation has found that some long-term care homes, often struggling with staffing shortages, are routinely doling out these risky drugs to calm and “restrain” wandering, agitated and sometimes aggressive patients.”

If I had read these statements in the early days of mom’s hospital care, I would have believed it without question– in many ways, it was true. Medications were not explained to me and questions I raised about her slurred speech and stoned-out state were silenced with the answer: “You don’t want her to fall and break her hip do you?” I felt my hands were completely tied.

This is the condition in which my mom remained for three months until finally we were able to get her a psycho-geriatric assessment by Providence Care. Within one month, mom’s medication was corrected, acute care issues were addressed and my mother was a completely different person. She was walking around unrestrained, (not the same woman she was before the dementia) but alert, funny, calm, more rationale. The change was so drastic, we honestly felt like she’d been brought back to life.

Today, she lives in a long term care home, under the care of a knowledgeable doctor and is still receiving the support Providence Care and I have come to appreciate the place that the proper medications – including antipsychotic – play in my mother’s life.

The newspaper’s inflammatory language and the implication that seniors in long term care homes get doped up every time they get a little cranky, don’t exactly paint the whole picture.

What the general public doesn’t know is how ugly an episode of delirium and hallucination for a person who lives with dementia can be.

 (I certainly had no idea.)

During some of my mother’s darkest moments while in long term care, she lived in a 24-7 state of panic and terror that everyone was trying to kill her. She could not be calmed, wouldn’t eat, drink or sleep and was suspicious of everyone and everything. She was desperately and successfully trying to escape outside in the middle of the winter. Not only was she harming herself but was striking out in self defense to anyone who got near her.  The last thing on my mind was the convenience of the long term care home or even the other residents, it was to bring peace back to Mom.

Part of what brought her back and keeps Mom from staying like this (I believe) – is the proper distribution of medications that include anti-psychotic drugs – Through the careful administration of medications and behavioural support techniques, most days, Mom is calm, active and alert.

I am not naïve to think medications are never misused or mistakes never happen, but the truth, I believe… lives somewhere in the middle.

So, what would help us as family members and care partners? –While I realize it isn’t possible for our parents/spouses to be actively involved in their treatment, We need to be. This would not only prepare us when others come to us with misinformation, but it would also give us the choice to be involved in our own care choices.

I believe if we knew more, there’d be less exaggerated news reports and hysteria and the care we’d receive would be truly person and family centered.

 

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Happy Birthday Mom!

Two years ago, I posted the below article: Birthday, Dementia Style. It is hard to comprehend that here we are two years later in almost the same spot. Tuesday my mother will turn 85 years old and while it is not how we imagined celebrating her 85 years of life, tomorrow my daughter and I will visit with a small cake a practical gift and share what remains: our love.

Here is a re-post of that blog from 2 years ago:

~Sharon

 

Birthday, Dementia-style

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Sunday was my mother’s birthday, Easter Sunday.

How do you plan a birthday celebration worthy of 83 years, for a woman with dementia?

The answer is you don’t.

Last year at this time my mother was still in the hospital fighting delirium and paranoia. Determined not to let a little thing like dementia and psychosis ruin her birthday (can you say denial?) I planned a big family celebration. All available family members gathered in the meeting room down the hall from Mom’s room, complete with cake and decorations. The only thing we didn’t have was Mom. In her fragile state, the whole thing left her overwhelmed. She wouldn’t open her eyes, talk to anyone or get out of bed.

Not one of my best parties.

So, this year family members wisely decided to visit Mom in waves throughout the week offering their own congratulations. Still, I wrestled with the urge to make it special – to make it the same as it was before Mom had dementia.

Walking through the department store searching for a gift for her I pondered this very thing. What do I buy for this new version of my mother?

Should I buy her a picture for her room? – No, changing her room disorients and confuses her.

Family photos? – No, the family photos she has are stashed away in her cabinet. She can’t remember who all the grandchildren are (since they keep changing) and looking at them frustrates her.

Special mementos? – No, they would be stolen.

Technology?  – No, it will start a fire if it is plugged to the electrical socket.

I could take her out? – No, She’s using a walker now and out-trips take more out of her than they used to. Several weeks after I take her out, she puts her coat on each time I visit, thinking we are going out.

And I realize I am trying to celebrate a personality that no longer exists. This is birthday – dementia style.

So, we begin again. We simplify, we downsize and we stop trying to make it something it is not. We replace the big family dinner -complete with the roast and gifts – with a small cake, a big musical card and a beautiful bouquet at nursing home table.

But the one thing that remains – and always will remain – is love.

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A Grief Unobserved

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Mom’s dementia and life at the nursing home feels pretty normal now. The shock and surprise of the disease has lost its sting. My mission has gone from rescuing her from crisis to seeing that she lives out her days in safety – feeling loved and affirmed with her dignity intact.

Most days I can live with that.

But, then something happens that reminds me how sad it all really is and how much I hate this disease! Today is one of those days. Today I learned one of my mother’s best friend’s husband just passed away.

My automatic reaction was: “Oh dear, I have to tell Mom!” and then I remember.

First, I can’t tell Mom because it is possible it might upset her, triggering responsive behaviours.

Second, there is a good chance she might not actually remember the people I am talking about. She hasn’t seen them since her life was hijacked by dementia.

But even more it reminds me that “that” mother – the loyal and laughing friend who loved and mourned with people – is already gone.

How do I mourn a person who is gone yet present?

It reminds me of the one thing that makes my heart ache – that there is no funeral for slow death by dementia. There is no joyous celebration of life for people who are still here.

It makes me angry too. I can’t help but feel my mom is getting ripped off. This women who spent her whole life loving and serving others dies a little every day right before our eyes. By the time, my mother breathes her last, she will have actually been gone for years. People will tell me that it is for the best – and they will be right.

So today, please join me as I grieve the mom who is gone and love the mom that remains.

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