alzheimer's | Blog | My Mothers' Caregiver
An elder care roadmap & observations from the journey
Blog
Migrated BLOG
alzheimer's

The Medication Question?

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 anti-psychotic 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 anti-psychotic - 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 naive 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.   

Comments
Login to post comments.
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

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.

Comments
Login to post comments.
Looking Back at 2013!

 

 Happy New Year to all of you from My Mother's Caregiver! Looking back over 2013, I have so many things to be grateful for. This community is one of the things for which I am so very thankful. Last year there were 3,800 views on this site. It just makes my heart happy to imagine that people came online looking for answers, support and understanding and they found it here. In celebration of this backward's glance, my stats show that one blog post in particular was a favourite. On June 18th, "In the Beginning" had 82 views in one day. (ahhh thanks guys!) I have decided to re-post it below. Perhaps, if you've never read it, you'll get a chance to now. If you did read it, I hope you'll enjoy it again and maybe even pass it on to someone else. Thank you for supporting me in my caregiving journey. I trust we've made each other's load a little lighter and will continue to do so in 2014. Here's: In The Beginning

Two and a half years have passed since we began our journey with dementia and caregiving.Sometimes I forget.Sometimes I forget the shock! I forget how frightening it was to watch my mother hide from me, convinced I was trying to poison her, steal her money or drown her in the bath tub. I forget feeling angry and tired and not liking this strange, paranoid and aggressive woman who had taken over my kind and gentle mother's body. I forget how guilty I felt and torn between everyone's conflicting expectations. I forget how uninformed I was and how powerless I felt to find that information.

The more Mom settles into her life in her long- term care home, the farther (thankfully) those memories live from my daily thoughts. But then, I meet someone (maybe like you) that is in that horrible "In the beginning" stage of your journey and I remember. Recently, I visited a family like this and was amazed that everyone had the same look in their eyes - that shocked look of someone experiencing a deep trauma - and I remember where I've seen that look before; in my own mirror. The good news is there really is help. There might not be a miracle cure, but there are answers and there is support. Even as things get worse - things can get better too. Take some time and stroll through the pages on this site. I am not selling anything. Unfortunately, the health care world is a maze, but there are answers and there really are wonderful people out there who want to help. So, when one door gets shut, don't be discouraged, keeping knocking and searching. Read the steps in these pages and posts to find answers, visit the links - all of which have good easy to read information. Contact your local Alzheimer Society. They will offer you books, information, conversation and support.

 You don't have to wait to know what the problem is to reach out for their support and counsel. They won't judge you or think you are over reacting and they won't charge you any money. It is my opinion, that this "In the beginning" is the worst stage of caregiving. There will be better days coming.You are NOT alone.

Comments
Login to post comments.
Remembering

Three years ago this very weekend, my frightened and delirious mother arrived - bags packed, house sold, all the way from South Western Ontario to move in with my equally frightened family.

Only a few weeks earlier she had been driving, cooking and paying bills. Now she couldn't decipher the hot or cold water taps, was wildly paranoid and didn't know the difference between night and day. That Christmas her gifts sat unopened under the tree while she sat (often restrained) in a hospital bed. My family and I were guilt ridden and had no idea where to find answers or support. Looking back, I can still hardly believe it. My chest tightens just remembering those heart breaking weeks and the frightening months that followed.

None of us would have believed she was at the beginning of her dementia journey. None of us would have thought three years later she'd be living in our town - but not our house - in a long term care facility. As I sit here writing this it occurs to me, I'm in the same family room that three years ago was set up so nicely like a little bachelor suite - housing her bedroom furniture a few living room pieces, TV, stereo and a small kitchen table. Today the only signs that she was ever here are her two chairs, a figurine on the fireplace mantle and the lingering sense of grief and loss.

It is definitely not my favourite anniversary!

Yet, the experience, like any difficult time, has forced me to become part of a human community of others who have experienced loss. I now notice people and situations I wouldn't have noticed before. I understand - just a little - how scared, sad and lonely other people feel when they lose a loved one slowly to dementia or similar diagnoses. I notice the widower, the young wife of the husband with cancer and the weary caregivers. 

It makes me want to reach out, to take a hand, to share a story and to love others. In the end, I think that is exactly what my mother would have wanted.

Merry Christmas to you and a Happy New Year! May we all be reminded to live and enjoy the moment we are in and to be mindful of our many many blessings! Wishing you all the best.

~Sharon

Comments
Login to post comments.
Good-night Guilt

As the evening winds down and I wrap up the last few items of the day, I close that last email, put away that dish and throw a load of towels in the dryer, I feel that old friend of mine (named guilt) whispering in my ear, reminding me that I am disappointed in myself ("You didn't visit Mom ALL week!") I sigh a little and try to brush it off with rationalizations, "but we had extended family here all weekend, dinner at my daughter's on Thanksgiving, (oh man, I didn't visit her for Thanksgiving!!)

I am working full time right now, I had meetings to go to and groceries to buy! But, I know I could have made a bigger effort, popped by for even twenty minutes. I thought about her every day. She's been a little off lately, having dental problems that are causing her pain and some behaviours. Arrangements have been made to deal with these issues, but it takes time and we aren't sure how she'll react to it all. Thinking about it and seeing her makes me worry and worry makes me so tired. The truth is sometimes it is SO HARD TO VISIT. Not to say it doesn't warm my heart to see her eyes light up, I still love her so very much. But, most days it takes a great deal of energy, heart and stamina to enter that home, look past the loss of who she used to be and try to find my mom inside the dementia. Sometimes it is a bigger load than I want to carry. But, I'm guessing I am not the only person in the room who feels bad for not doing more and I am definitely not the only person who feels guilty. So let's make a deal, I'll forgive me and you forgive you. We'll realize the bad guy here is not us but this stupid disease. We'll take care of ourselves. Get a good sleep, do our best and get up and go again.

Comments
Login to post comments.
Alzheimer's Request

 

Image

I’m not sure where the below words originally came from, I’ve read this and versions like it online before, but today I received it from my good friend Jeanette. The difference today was the timing, I really needed to read this today. Some days we need to be pulled back to the center and reminded that when it comes to being a caregiver – loving them really is enough. Enjoy and Be Encouraged! ~ Sharon

Alzheimer’s Request

Do not ask me to remember, don’t try to make me understand.                                                                                                         Let me rest and know you’re with me,                                                                                                                                                    Kiss my cheek and hold my hand.

I’m confused beyond your concept, I’m sad and sick and lost.                                                                                                              All I know is that I need you,                                                                                                                                                                    to be with me at all cost.

Do not lose your patience with me, do not scold me or curse or cry.                                                                                                   I can’t help the way I’m acting,                                                                                                                                                                I can’t be different though I try.

Just remember that I need you, that the best of me is gone.                                                                                                               Please don’t fail to stand beside me,                                                                                                                                                        love me till my life is gone.

Comments
Login to post comments.
Summer Time

 

Image

Please note, I will not be updating my posts regularly during the summer months –  I am enjoying some holiday time with my family. Be sure to check out the archives and any of the information pages for elder care answers.

Cheers,

Sharon

Comments
Login to post comments.
I Remember You!

 

Image

Sometimes, the change that comes with dementia is fast and furious leaving people spinning, but most often it is slow and sinister. I hate dementia.

This last year, the changes in Mom have definitely been there. but they were so subtle, so gradual – that I could almost talk myself into believing, “this isn’t so bad…maybe she will plateau and not disappear from us completely after all.”

Two things have happened lately that have burst that bubble for me, reminding me, she is slowly slipping away.Thankfully, they aren’t huge things. 

The first thing, she has acquired a doll. She got it from the nursing home and it is her constant companion. This a very common and comforting thing for residents with dementia. I know “with my head” that this is not a big deal. She likes it. The doll gives her pleasure and something to care for and that’s what really matters ….right? 

Well, I hate the doll. Firstly, because it is the size of one year old and just plain creepy looking with eyes that open and shut. Secondly, much of our conversations now are about the doll -or should I say “the baby” …what happened to her slippers and how cute she is. Mom baby-talks with it, has called it “Susie” and I have had to clean food of its face – so she’s also feeding her.

The real reason, I hate the doll … I mean Susie… is because it reveals a deeper slide in her mind, a more diminished stage of reality… a loss of who she really is. It makes it even harder for me to find her.

The second change is her memory. While she has been forgetting all along, those files from deep in her mind, could often be pulled up, dusted off and with some prompting recalled. She would always recognize people from her past, even if she couldn’t name them or put all the pieces together, you could see it in her eyes that she “knew” them.

A couple weeks ago, I saw that change for the first time.

A long time friend, from her old church moved to our town. I was so excited to think someone from her past would be near to re-connect with Mom. But, when this friend walked in the door, Mom turned to her with a slightly flustered look and said, “I don’t know you. I don’t remember you at all.” What a sucker punch, to think that the file wasn’t just dusty, it was gone.

But, before I could react, her friend just smiled and saved the day. “That’s ok”, she replied, ” I remember you.” She began to tell Mom all the things she’d meant to her and the things they’d done together. It was such a kind and generous gesture, I just sat and marveled. In that moment dementia lost and love won.

A few days later, Mom and I sat in the courtyard and I asked her if she knew my name. She hadn’t said it in long time. “Wanda?” she asked. “No, that’s your youngest sister, I am your youngest daughter – Sharon.” Mom frowned and apologized. “Sharon”, she repeated, “I forgot.”

That’s ok Mom because I remember you! xo

 

Comments
Login to post comments.
Another Look at Caring for Each Other

We really are all in this together.

Happy New Year Caregivers!

It is hard to believe two New Year’s Days have past since I began this blog. According to the statistics, this blog had 6,800 views last year. Our readers are from all over the world! Funny how knowing that makes me feel a little less alone in my caregiving journey. Hopefully you feel less alone too.

Last year, the blog post “Caring for Each Other”  (written last Spring) was the most viewed post, receiving 130 views. So, I am posting it again. While the dates might not line up, the heart of the message is still the same. We are not alone. Blessings to you in 2013. ~Sharon

Caring For Each Other

Last week I had the privilege of gathering with a group of other caregivers at a Caregiver Support Workshop called “In My Shoes”. It was an amazing event complete with speakers and booths with information and resources.

What struck me the most at the event was a sense of what Anne of Green Gables used to call a “kindred spirit” that existed between the other caregivers and myself. Without even knowing each other, a feeling of intimacy and understanding developed as soon as the words, “My husband has Alzheimer’s” or the exchange of teary glances from two sisters supporting their mother were shared. We really are all in this together.

I’m sure there are people who find it odd that I share so openly private family matters. Most of us were raised not to do so. But, there is great comfort and strength given and received when we share with someone who knows what it feels like to be “in our shoes.”

Let’s be honest, this caregiving gig can be an ugly thing. We see our spouses and parents fade into a shell of what they used to be. Often their behaviours are dangerous, difficult and embarrassing. If you are the lone ranger type, I encourage you to reach out to someone who is walking the same path as you. Find a support group; they are full of people – just like you, whose lives have been derailed by dementia and loss. These people have found resources, ideas and ways to cope a little better and are there to make your load lighter. Contact your local Alzheimer’s Society, your local community care supports and VON for Respite. You’ll be glad you did. You are not alone.

Finally, here is a cute little gift our local Alzheimer’s Society of BHQ gave the workshop participants last week. It is called “The Caregiver’s Tool Kit”. In it is everything you need to be a caregiver and I doubt they’d mind me sharing it:

The Caregiver’s Tool Kit

Cotton Ball: A reminder that no one ever died of dust bunny disease. Quit feeling guilty for what’s left undone.

Safety Pin: To hold yourself together on frazzled days.

Candle: To remind you to let your light shine, but burn it only at one end.

Rubber Band: For life’s boo-boo’s. Mistakes are essential for learning to live to one’s potential but look for the hidden lessons.

Outlet Protectors: Don’t let all your energy drain out when you feel frustrated. Plug the leak with a brief break.

Perspective Adjusters: These look and taste like chocolate kisses, but they are molehills; don’t make them into mountains.

Eraser: For when you want to change your mind. Sometimes second thoughts are second chances.

Paper Clip: Plans that are neither glued nor stapled are easier to re-think. Be willing to change.

Enjoy!

 
Comments
Login to post comments.
Learning Gratitude

 

I’m learning to be grateful. I don’t just mean saying thank-you more or being more polite.

 I am learning to embrace gratitude in every single aspect of my life.

It is no surprise, in this hectic, fast paced, technology-laced world; people are seeking lives of grateful simplicity. Blogs, magazines and books are celebrating the notion of living with less and actually “seeing” what and who we have – instead of walking right by. Authors like Ann Voskamp and Brene Brown’s books are making the New York Best Seller’s List.

But the person I am learning the most from is my Mom.

Just last week I watched her dance. As I arrived at the nursing home, Mom was a few feet ahead of me strolling down the hall behind her walker. She’d stop and shake her leg, take a step, stop and shake the other one. Not sure what was happening I picked up my step. Perhaps her pant legs were dragging on the floor I thought, anticipating that she might take a tumble. But when I got up to her side, I realize she was still humming, dancing and enjoying the line dancing event that had just wrapped up. Right there in the hallway she showed me her best moves.

I am not trying to suggest someone losing their mind, their personality and their memories to dementia is something to wish for, but at the same time watching Mom live with it has taught me about a lot about living.

At the beginning of her disease, Mom fought hard for control of her mind and her memories – a battle she could not win. But once she surrendered to her new normal, she began to practice something that has really left me shaking my head – daily gratitude.

Mom no longer worries about her car, her furnace or what people think.  She doesn’t stress for an afternoon over whether or not she should apologize for being misinterpreted. She no longer frets about money, her children’s health or wellbeing, her own health or the condition of her soul. She just lives every day in a state of simple gratitude.

She is thankful for the person who serves her lunch. She is thankful for my modest visits. She laughs at the most basic jokes and she smiles back at the faces smiling at her. She hugs and says, “I love you,” without any thought of social graces or people’s perceptions. She gets more joy out of a bowl of ice cream than most people get at an entire amusement park. When she steps outside she sees God in the large trees, the flowers and the squirrels and offers Him thanks and praise with simple child-like prayers.

Perhaps, there is something to this scaled-back basic way of life. I want to be more grateful for things as basic as a warm cup of tea, my son’s laugh, a warm sweater on a cold day, a friend’s phone call, my husband’s embrace, the vibrant colours of the changing leaves and the very breath I breathe. If I could only clear my mind enough to daily notice and appreciate all the little things I miss each day, my life would be lighter, fuller and happier.

Like I said, I’m learning.

Comments
Login to post comments.
Holding On

 

A little more than a year has passed since I began this blog. In many ways it has been an unpacking of my own tangled thoughts and emotions – a way to pour out all the worry, pain and disappointment, sort it out in my mind and heal. Recently, I read through the things I’ve written this last year and I discovered a common thread.

I have written a lot of what some might call optimistic or even romantic notions about caregiving. I’ve talked about how each visit I try to “find” my mother. I’ve described the joys and blessings of being able to return the love and care that my mother once gave me. I’ve talked about forgiving myself, putting down the guilt and living in the moment. As I read over my posts, I couldn’t help but think that while I still believe all those things – I don’t always feel them.

After all, let’s be honest – it is still hard!

As you know, loving and caring for a parent, a sister, a spouse, a friend who is slowly dissolving in dementia or illness is a long, lonely, guilt wracked, worry-filled and heart breaking road.

Even though things have settled some from our early nightmare days of delirium and paranoia, some days are still tough. Just when I think I have my emotions under wrap, that I’ve got “used to” it all,  grief will side swipe me from the middle of nowhere. Some days, I’ve stayed home because I just didn’t have the heart to see Mom walk me to the door and ask if she can come too. Some days it is just too hard.

Even though I’ve learned the importance of forgiving myself and letting go of guilt, lately guilt seems to be licking at my heels. Now that I am working again I have less time and less energy to visit Mom. She is less in my thoughts,  I am less available and I feel guilty for leaving her. (Oh, I know in my head what the truth is, but the heart is harder to tame some days.)

Even though she is teaching me to embrace each moment – I still mourn the Mom that used to be and at the same time worry that I’ll soon lose her all together.

You know what I’m talking about – you’ve been there too.

So, why do I write about the “happy” side of caregiving so much? Am I being dishonest? Is it wishful thinking?

I don’t think so.

In all honesty, day to day caregiving is everything I’ve mentioned above. It is tired, sad, lonely, and hopeless and guilt wracked.

But, that is just the small picture.

When we take a step back and go up on the “balcony of the situation”- there we see the big picture.

Then we see that caregiving really IS a privilege. We see that for a short time (although it doesn’t seem short while we’re in it) our loved ones remain with us and while difficult sometimes – this is a gift.

We are answering a great calling to love and keep someone we love’s dignity and honour intact. By remembering who they once were and yet loving who they have become – somehow we keep them real and unforgotten. That is important.

Remembering the big picture helps us to hold on and inspires us to get up and go again.

Be encouraged!

 

Comments
Login to post comments.
Great Expectations

 

Last week was a bit of an anniversary, although not one we really celebrated, one year has passed since my mother moved into her nursing home.

Looking back over this last year and the chaotic months before it, there are so many things I know now that I did not know then.

  1. Delirium? Alzheimer’s I’d heard of, I had a vague understanding of dementia, but what the heck was delirium? Today I know that a senior’s mental health is a fragile thing that can be affected by vitamin deficiencies, dehydration, illness or the most surprising but nasty mind-benders, a urinary tract infection. Even very bizarre and frightening behaviours in the elderly can have temporary physiological reasons not related to Alzheimer’s.
  2. Hospitals are not senior-friendly. Even the most caring and capable hospital is not designed to care for seniors exhibiting “behaviours” related to delirium, dementia or Alzheimer’s. Rushing off to hospital hoping for tender loving care is going to leave caregivers cold.
  3. Caregivers need to act as advocates for their loved ones. For a caregiver like me who is passive by nature and non-confrontational, it was difficult to challenge doctors, nurses, hospital discharge planners and CCAC staff when I questioned if their actions were the best thing for my mother. However, if you are a take-charge, get- your- way person, then being an advocate might be equally difficult because sometimes gentleness, waiting and negotiating is required to be a good advocate.
  4. There is life after Alzheimer’s. When Mom got sick a year and a half ago, I felt as though my mother had died. I have learned as difficult as it is to see your loved one slip away, there is still life, love, intimacy and affection to be given and received. As I’ve written before I discovered, Mom is still “in there”- I just have to look harder. Changing my mindset has allowed me to enjoy my mother again – even as she fades away. Every good day is a gift to be cherished.
  5. I know now that sharing my experiences (the good the bad and the ugly) and carrying the pain of others, has done as much for me as anyone. Writing this blog, articles and speaking to groups about my experiences has helped me process my feelings, understand and verbalize my grief and experience healing. Feel free to leave your story here on our “Our Story” page or on My Mother’s Caregiver’s Facebook page.

Let’s help each other. We’re all in this together!

Comments
Login to post comments.
Top Weekend Reading Picks

Here are My Mother’s Caregiver’s Top Weekend Reading Picks for Caregivers:

Ontario health care recognizes their need to streamline and organize their services:

http://www.ottawacitizen.com/health/Organization+better+senior+care+health+network+says/6392600/story.html

Why Do Alzheimer’s Caregivers Torture Themselves? :

http://alzheimersfrontrow.blogspot.ca/2012/04/why-do-alzheimers-caregivers-torture.html?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=Feed:+AlzheimersFrontRow+(Alzheimer’s+Front+Row)

Recognizing the early signs of Alzheimer’s can keep you and your loved one from being in a crisis situation:

http://www.healthmedwatch.com/2012/03/the-10-warning-signs-of-alzheimers-disease/

Seniors ARE safe drivers:

http://www.thestar.com/news/canada/article/1155546–seniors-are-safe-drivers-editorial-says?bn=1

Have a wonderful Easter Weekend!

Comments
Login to post comments.
Top March Break Reading Picks

 


Ok, so usually this is called My Mother’s Caregiver’s Top Weekend Reading Picks – but this week is the March Break for our family, so this post is going to have to hold you over for a whole week. Enjoy these articles and information.

See you in a week! :)

 

 

Are you collecting diamonds, or just a bunch of rocks? ~http://ow.ly/9rJXo #life

An alarming newspaper article reminding us how vulnerable seniors are to scams and abuse: http://www.thestar.com/news/canada/article/1143444–elderly-widow-fights-to-get-home-back-from-caregiver

Are we ready for the days ahead?http://www.ucobserver.org/features/2012/03/silent_epidemic/

Last week I share a video that explains how Alzheimer’s affects the brain, this week here’s a link to a video describing the urgency of the upcoming Alzheimer’s epidemic:http://www.youtube.com/watch?v=ZOZBWqd5JAQ&feature=relmfu

Know the signs of caregiver burnout: Signs of Caregiver Burnout – AgingCare.com

www.agingcare.com

Another life story: http://www.buffalonews.com/life/article756510.ece

Compassionate elder care in Canada: http://www.carp.ca/2012/03/09/compassionate-care-in-canada/

Comments
Login to post comments.
Top Weekend Reading Picks

 

My Mother’s Caregiver’s Top Weekend Reading Picks for this Week. Enjoy!

A look at how Gordie Howe’s family was touched by Dementia:

http://www.vancouversun.com/health/Gordie+Howe+battling+memory+loss+says+family/6093407/story.html

Canada’s Hospital Bed Crisis and the potential solutions:

http://www.themarknews.com/articles/8120-toward-more-efficient-care

A beautiful poem by Patricia Anne Elford:

http://www.manhattandeclaration.org/poem.aspx?id=675

Caregiver Facts from the Care to Know Centre:

http://www.caretoknow.org/content/caregiver-facts

Elder Abuse Info:

http://www.yorkregion.com/news/article/1259335–breaking-silence-around-elder-abuse

 

Comments
Login to post comments.
The Care Crunch

 

 

 

This very day, a senior and his/her spouse or children will arrive at an emergency room at a local Ontario hospital.

That senior may have had a stroke, fell and broke their hip or is showing signs of dementia and delirium. They are not going to fully recover (something none of them know or have accepted yet) and this is the first lap of a longer marathon of life changes they will face – leaving their home, giving up driving, losing their independence and needing to be cared for by others.

This “moment” eventually happens to many elderly people, every day and everywhere. They will arrive at these hospitals frightened and looking for compassion. While their circumstances are different, they will all find one thing will be the same – an undertone of resentment to all the care they receive along with a sense that they are “taking up a bed” from people who are going to recover completely and return to their homes.

This is not a personal slam on hospitals or caregivers. During my mother’s hospital stays I met doctors, nurses, housekeepers, personal support workers and parking lot attendants who made me weep with their kindness. But the fact remains, hospitals are “Cure-givers” not “Care-givers”.  The system is designed to treat and release patients.

With the shortage of nursing home beds and the growing elderly population, this has created a Care-Crunch. Doctors and staff are pressured by the administration and policies set by the Ontario government to get those seniors out of those beds as soon as possible. As I mentioned on my page Healthcare Hurdles the first hospital my mother stayed in was an hour’s drive from our home. By the third day my mom had been assessed as “nursing home ready” despite still battling delirium and psychosis that was NOT a permanent part of her final diagnosis. To avoid the pressure being placed on us to put her in a “temporary” nursing home bed an hour’s drive away, we arranged for her to be placed in a less secure local retirement home. Another move in her still fragile mental state meant more dangerous behaviour. As a result, five later, under doctor’s orders, she was taken by ambulance to a closer hospital (change #3 for her) and admitted. Less than four hours later, my mother’s new doctor phoned from the hospital, asking me when my mother was leaving – citing open beds in far-away nursing homes for this terrified woman who hadn’t even had a psychogeriatric assessment yet.

When I told the doctor we would move my mother as soon as a nursing home with thirty minutes’ drive opened up he said, “Well, then you’re going to have to pay!” That was only one of two conversations we had during her three month stay.  It was also the day I decided to start this blog – the day I thought, I never want anyone to feel as helpless and vulnerable as I do right now.

The following two news articles – one current and another one from before Christmas – illustrate again this crisis of care.

http://www.themarknews.com/articles/8120-toward-more-efficient-care

http://www.dealzoid.com/f50/hospital-apologizes-threatening-charge-elderly-woman-s-473650/

AND IT MAKES ME SO MAD!!

No one should have to enter a hospital, in such a vulnerable and frightened state and be treated like a burden. If the system isn’t working any more than we need to make changes! I am not even suggesting that care should be free- simply available and offered with dignity and respect to people who have built the very structures we now take for granted.

So here’s a challenge: Let’s get involved, let’s make some noise and let’s make things better!

Comments
Login to post comments.
Knowledge is Power

Eight Signs of Alzheimer’s

January is Alzheimer Awareness Month. If you are a caregiver to an older parent, relative or spouse it is important to know what signs to look for.

Sadly, we often choose to look the other way when it comes to our loved ones developing Alzheimer’s and Dementia’s. Bart Mindszenthy, author of Parenting Your Parents, says that when it comes to issues like Alzheimer’s, parents are “in a state of denial” and their adult children or spouses are “in a state of avoidance”. These are difficult issues to face, but ignoring them just compound them. Knowledge will prepare you to face difficult times.

Do you know the Eight Signs of Alzheimer’s?

If there has been a change in the following areas, you may be dealing with Alzheimer’s or dementia.

  1. Memory Lapses. Do they often forget things, especially things learned recently? Are there repetitive questions and re-telling of stories, sometimes minutes of being mentioned?
  2. Confusion over words. Going blank when speaking occasionally is very normal. If it is increasing or becoming common place that should be a warning sign. Having difficulty saying the “right” word is also common. The word “hairdresser” might be used instead of “hairdryer”. This is very frustrating for the person trying to communicate.
  3. Marked Changes in Mood or Personality. If your normally out-going mother becomes withdrawn or assertive and suddenly has uncharacteristic fears, this could be a sign of Alzheimer’s. Marked mood swings and changes to sleep and appetite should be cause for concern.
  4. Trouble with Abstract Thinking. If your normally competent spouse is now struggling to pay the bills, follow discussions or instructions, see a doctor.
  5. Difficulty Completing Familiar Activities. This was the first thing we noticed with my mother-in-law. An accomplished cook and baker, we arrived for a visit to find she had only boiled carrots for the meal. She also had half- finished knitting projects and only seemed to half-clean her apartment.
  6. Disorientation. Getting disoriented in an area he knows well or getting lost and turned around more easily than normal while driving may be a sign of Alzheimer’s.  People also can lose track of time – not remembering the time of day, month or year.
  7. Misplacing items. Although many of us suffer with losing our keys, glasses or wallets, if there is an increase in this behaviour or things are being found in inappropriate places – be concerned. Finding a wallet in the freezer would be an obvious one. My mother developed this early on. She will “stash” stuff away in random places so no one takes it, only to forget where she put it. Taking it to the next level, then she will believe someone stole it.
  8. Poor or Impaired Judgement. If your loved one is making questionable- out of character – choices, have them assessed. Some of those things might be: poor money decisions, hoarding or purging, can’t seem to make a simple choice, not taking care of themselves properly, their dressing not matching or not weather appropriate and not being able to plan ahead.

The more we know the more prepared we are.

Comments
Login to post comments.
My Mother's Caregiver Devotional Update - Blindsided

 

Ever feel blindsided by life?

 

Read today’s post at our sister site: My Mother’s Caregiver Devotional.

“…What a comfort. What freedom. He gives perfect peace to the blindsided. I place my paper plans at His feet and still shaking I take His hand in mine and choose to trust. I’m going to need it for what lies ahead.”…

Comments
Login to post comments.
The Reluctant Visitor

 

It’s one of those days- we all have them. Today I am going to visit Mom.

I was going to go this morning, right around 10am when she’d be finished her breakfast so it wouldn’t interfere with the exercise class she attends on her better days. But 10 o’clock came and went and now it is after 12 noon and I still haven’t put my coat on.

A sense of sadness is hanging over me today. The last few weeks our visits haven’t been good. There haven’t been those little jewels of connection, those moments where I still can see the twinkle in her eye and know that she is still “in” there. Instead she has either been frantic and paranoid or distant and mumbling. I find myself throwing in that extra load of laundry, checking my email one last time, wrestling with the dread that has settled in my bones.

Today I don’t want to visit my mom. 

What a horrible thing to say, to think, to write…but it is true. I swallow a little guilt. It doesn’t mean I don’t love my mom. It doesn’t even mean I won’t go – I will. But some days it is difficult to muster up the smile when all we see is sorrow. We all have days like this and that is ok.

On days like these I remember with clarity my mother’s words a few years back as we stood in an antique shop down the street from her home. It was during one of those “If something ever happens to Dad” talks. We were chatting about the idea of Mom coming to live with us. “We all get along, you could help us and we could help you – it just makes sense.” I said. With that prophetic-mother look in her eyes she said calmly, “You don’t know what you are saying. As people get older they get less fun. I may not be the person I am today.” Those words are ringing inside me today. She knew.  She had lived long enough, watched her parents and others long enough to know what I know today. Life is fragile.

She also knew that every day was a sacred. She knew that there were no guarantees and that was ok with her. That day year’s back, she wanted to enjoy my company, to window shop and laugh – not plan for future days that may never come.

 So after I post this I will finish my lunch, get on my coat and share this sacred day with mom. Maybe, just maybe, I’ll see the twinkle.

Comments
Login to post comments.
Local Event

Hey Y’all, I’m volunteering for the Alzheimer Society of Belleville, Hastings and Quinte. They have a HUGE three day Fall Book Sale going on this Tuesday, Wednesday and Thursday at the Bayview Mall, 470 Dundas St E. Belleville. They do a great work (with very little funding). The first day books are full price, second day books are 1/2 price and the third day (although selection wil be smaller) you can bring a bag and fill it for a toonie. It’s a really BIG sale. Come out and get a good book while supporting a great cause. thanks:)

Comments
Login to post comments.
The Healing

 

The Healing

 Looking back with a family member yesterday, we realized we’ve reached the year marker for when my mother’s dementia began to rob her of her peace of mind and independence. Almost a year since we lost our mom – sort of. Mourning and grieving for someone who still exists is a complicated affair. It seems her situation is an ever-present, wound that can’t heal.

 As I mentioned in the post “Mom’s Rough Day”, my mother has taken a down turn. The little bit of Mom that was still there is even smaller now. Some days are better than others. Friday she was calm. We sang songs together and ate cake. Today she is frightened, distracted and agitated and carrying on a conversation is a chore.

 Yet, deep inside me I feel it – a healing is happening. I am not sure when it started but it reminds me of a nosebleed. You know what I mean. There you are pinching your nose, holding up the cloth to your face and suddenly one minute you realize – “hey, I’m not bleeding anymore.” That’s how I feel about my mother.

Not to say I am not still sad. I continue to grieve and mourn. I want my whole mom back! Today I am weepy and tired. It wouldn’t take much to bring me to tears because I hate to see her suffering. But at the same time, I’m not crushed like I was before. I feel stronger, more content and ready to face the future. I have begun to see our good visits as sacred moments that I am incredibly privileged to have. The shared laughs, hugs and little intimacies where a true connection happens have begun to feel like miracles. I feel like Mary of the Bible (Luke 2:19) when it says, “But Mary treasured all these things and pondered them in her heart…” I find myself leaving our visits thinking I’ll have to hold onto this because it was a gift I may not get again.

 Whether you are caring for a parent, a friend, relative or spouse, I want to encourage you. On the days you think, “I just can’t do this!” You can. I believe there is meaning and purpose to everything that happens under the sun, no matter how chaotic it feels. We have the incredible privilege and calling to bring love and comfort to someone who is suffering. Yet, get some help. Find some tangible support. Contact your local Alzheimer Society, church group or where ever you find support. Cry, share, laugh and be loved.  It hurts, but the bleeding really does stop.

Be encouraged. Healing comes.

S.O.

Comments
Login to post comments.
Mom's Rough Day

 

I hate Dementia. I hate Delirium and I hate Alzheimer’s.

If you’re reading this you might be thinking – get in line. Today was one of those really bad days for my Mom. Perhaps she is fighting infection. Whatever it is, today is one of those days when delirium and dementia have her mind gripped in their torture. Today she believes everyone is against her. She is frantic, sweating, trembling and destructive. It took three of us to keep her from getting out the door at the nursing home when someone tried to enter. Today she has no peace and it breaks my heart. I hate it. What a horrible disease!

And yet, even in this horrible moment I feel blessed. Blessed to have been able to bring a little comfort to my mother when she could find no comfort. She trusted me enough to take some of her pills. She had enough faith in me that for just a moment she believed the whole world just might not be against her. It reminds me of the times she must have walked the floors with me, rocking me in a state of fever and sickness- refusing to be calmed. Bringing people comfort IS a great privilege.

Also, a lovely gentle-hearted woman who comes to the nursing home to visit her husband blessed me. Her husband has Alzheimer’s and has more bad days than good from what I’ve seen and yet this beautiful woman took the time to come and walk with my Mom and sit and ask me if I was okay. Whenever I begin to doubt if there are any good left in the world, someone like her reminds me- there really are still people who care. I am not alone and either is my mom.

Finally, the staff blessed me. Despite behaviours that must have been a great disruption to their busy jobs, they all cared. They all displayed honest compassion and concern. Today they cared and made my burdens it little easier to carry.

Hopefully, by sharing our stories it will make all our loads a little lighter.

Comments
Login to post comments.
Alzheimer's Caregivers Get a Break

Local Event and Resource

The Alzheimer Society of Belleville-Hastings-Quinte hosted an event called “Rediscover Me,” was designed to give caregivers a pressure-free day. See the below link for the full story and for more information about the help and resource available for caregivers.

http://www.intelligencer.ca/ArticleDisplay.aspx?e=3328390

Comments
Login to post comments.
My Mothers Caregiver

Share your insights, resources and observations about elder care, caregiving and family life.

Comments
Login to post comments.
 
Login
  Categories
  Archives