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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The Launch of the Lived Experience Cafe!

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The Lived Experience Cafe:  Learning from the experiences of those affected by dementia and other related diagnoses. Come share your suggestions for change.

 

I know it has been awhile since I’ve shared on here, I’ve been working on something and it is finally ready! 

 In the past few months have had the privilege of meeting or talking with over 80 persons affected by dementia – both caregivers, friends/relatives, adult-children, and persons in the early stages of the disease as part of the Lived Experience Network project. So much valuable information for change and passionate stories have been shared.

Thank you!

 I am very pleased to inform you that March 1, 2014, we are launching the “Lived Experience Café” at www.dementiacrossroads.ca. This online space is for you to leave your advice and suggestions for change on various discussion forums and to participate in Live Chat Events. The date for the first Live Chat event will be announced soon.

 Special thanks to Dr. Dallas Seitz for letting us piggy-back on his project Dementia Crossroads and to share his website. The rest will be coming soon.

Some of you have asked what I am doing with all the information I collect. Firstly, I have been able to be part of Process Planning and Guiding Coalition meetings with Behavioural Support Services of Providence Care, sharing your observations as they relate to the creation and development of new services. I have also served on a review panel for behavioural support plans that are being created across the province. Secondly, I just submitted a preliminary report to our team leaders Kathy Baker and Dr. Ken Le Clair, detailing the reoccurring themes I have gathered in our conversations. A complete report will be submitted to elder health care leaders across the South East region later this Spring.

So far, I have connected through face to face meetings and telephone conversations with people from Brighton, Belleville, Trenton, Frankford, Belleville, Perth, Ganonoque, Kingston, Bancroft and Prince Edward County. In the next two months, I am very excited to be visiting groups in Madoc,Tweed,Smith Falls and Brockville. The phone calls and emails come in every week.

I know how much the support I find here on http://www.mymotherscaregiver.com means to me. It is my pleasure to be able to come alongside and develop another such community – one designed to help make change for seniors in South Eastern Ontario. How exciting!

I look forward to speaking with you on the Lived Experience Café at www.dementiacrossroads.ca. Please come and join up and start the conversations rolling.

with thanks,

Sharon Osvald, Lived Experience Coordinator


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Caregiver To Caregiver TIPS

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In my position as the Lived Experience Coordinator, I’ve had the privilege of meeting some amazing caregivers, as they share their stories and advice to help improve elder care supports and services in South Eastern Ontario. Recently, I met Ann who for many years has been responsible for both a father and mother dealing with Alzheimer’s. After hearing some of the lessons she has learned in her journey, I asked if she’d be willing to share some of her tips with us. Thank you Ann for reaching out to others who are carrying such a heavy burden and giving them some tips to make that load a little lighter.

ImageThings You Can do to Improve Quality of Life While your Family Member is in Long Term Care

 By: Ann

Firstly, let me say that when I ventured tentatively in to visit my mom in the long term care home for the very first visit I was sort of scared and quite nervous, learning the door codes, worrying about other residents trying to get out the door and unsure where to go. Having dropped my mother off days ago and I had not even gone inside with her! I simply had lied to her about why she was going there and I drove off!  I was freshly grieving the death of my father and some days wondered just how clearly I was thinking. So, when I finally made my way into the building and I suddenly rounded a corner and found my mom walking away from me, she turned back and looked up at me and she said “YOU can just turn right around and go back out.” Well, to say the least my heart dropped- but I persevered and we have such great visits and are building great memories together.  The reasons we have such great visits is that I work hard at it and here are some ways that I do that:

 I ensure that the Nursing home knows all there is to know about my mother: The Alzheimer’s society provides a great booklet that you complete about your parent and you then provide a copy to all caregivers, providing them with everything they need to know about your family member. This booklet addresses things that matter like how to calm your parent when upset, what their abilities are and a little about whom they were and what they are like etc. When I delivered my booklet to the nursing home they were SO excited and pleased to have all this info at their fingertips to share easily with staff. Such a great idea!!

  • In addition to that,  I give caregivers a cheat sheet, with some of the stories that mom likes to tell over and over, all they need is enough info to prompt her to tell the story once again.
  • Copy activities that the nursing home is offering: Our nursing home offers a program that is set up like a nursery with life like dolls. For me that meant buying my mom a second hand baby bassinette to put all her stuffed animals into. What caught me off guard was that she thought I was pregnant and offered me pregnancy advice and yet at the same time she gave me heck for making a mistake in life!
  • They offer a gardening program, so I asked to access the large table of plants one on one with my mom and she enjoys deadheading the plants and transplanting snips of plants.
  • They offer a cooking program so I access the kitchen and although mom has little interest in cooking we have had great success when I bring all the makings of a sandwich in various containers and we enjoy making sandwiches together.
  • They offer music often so I purchased a child’s MP3 player. I found that if you buy things in the children section they are easier to use. The one I bought called the SWEET PEA will turn on by pressing ANY button at all and it shuts off automatically and it comes in a hard plastic indestructible case that is easy to hold and easily labeled with very few buttons.  You can load it with your choice of songs from the internet and I found this to be an invaluable toy when we were sitting in waiting rooms for various appointments. My dad would be happily listening to his favorite comedians like the Smother’s brothers or Abbot and Costello or he was singing out loud (at little too loud at times) to his favorite oldie songs.
  • They offer a folding program, so bring things to fold, which can be as simple as Kleenex or I have purchased facecloths at the dollar store. Once we have them folded I take them to the bathroom, give them a good shake out of sight of and I bring them right back as if I have a new stack to fold.
  • Get the email for the activity coordinator so that you can develop a relationship with her and you will then be able to remind her to remind your mom to attend activities and between you and her you will be able to tag team your mom into attending more events and activities and next thing you know the activity coordinator is emailing you suggesting your mom be a part of something that you may not have even thought of!
  • Outside the room each resident has a glass box or memory box designed to keep special items in that can indicate to staff more about my mom and her past and it often will provide a source of conversation for the staff person but my mom and I like to change this box with the seasons by purchasing dollar store items and spending an afternoon decorating the shelves.
  • Ask the nursing home if you can put up a bird feeder outside the window. We have done this and many other residents are actually able to see it from the kitchen and the second floor so we are providing entertainment for many.
  • IF you really want to accomplish something such as a hair appointment or ensure success at attending an activity I phone her prior to remind her. If you don’t have a phone, remember that nursing homes are obligated to provide the use of one. My mother’s home involves the staff carrying cell phones for work and they have always been willing to use their cell phones to allow me short communications with my mom.

Purchase a phone that will be most easy to use as she progresses. Go straight for the phone where you can put names on the phone and yet she can still dial numbers. Forgo caller Id and message machines. My mom is at the stage where she just pushes a name, any name at all and she never knows who she is going to get which is just fine.

SKYPE: SKYPE  is something we do weekly with family out of town. Mom calls it the “tv computer thing” and she requests it often.  At this point she is able to walk around with it and brag and introduce her kids to whoever is in the hall!  Sometimes we creep family on facebook to see what they are up to and to see all the pictures they post.

You Tube: Sometimes we view youtube funny videos of cats or dogs doing funny things.  

Magazines: I order magazines vs books, as the ability to read and retain diminishes. Short stories are endured.  I find Reader’s Digest is just perfect but picture books are also very well liked.

Private Care: IF you can afford a private caregiver, even for just an hour visit once in a while I find that I can return to being “a daughter” again even if it’s only for a short while.  For me, personally the biggest benefit I got from having a caregiver in place prior to nursing home placement was that the caregiver was able to greet my mom on her arrival the very first day, and when I was asked to leave she was able to stay and be my eyes and ears and with texting she was able to give me great comfort.  Another benefit is that when a illness or contagious outbreak occurs on the ward, the first thing the home will often do is limit resident contact by cancelling activities for as many days or weeks as necessary. By having private care staff in place, I found that they are willing and able to visit during these times (when I was not lol) and they could provide my mom with activities to keep her entertained during these times.

Handicap Sticker: I keep mom’s handicap parking sticker in her chart at the nursing home so that any family member taking her out can access it.

Two is Better Than One: When you purchase an item that is a favorite and would be sadly missed if it was to go missing and lots of things go missing, then make sure you purchase TWO not just one and keep the other one handy.  We found that some of mom’s very favorite things would actually cause her stress about them going missing and so we resorted to moving favorite things up high. We were also advised that the light fingered often will choose to remove items lying around vs on a shelf. We have two TV remotes.  You may not need two purses but having two wallets has come in handy!  I purchase them at the dollar store. I have resorted to several pairs of glasses and the optometrist will give a discount and not even bother asking for an appointment which is nice. A fellow resident liked to brush his teeth in mom’s bathroom and so we kept several toothbrushes on hand.

I Know her favourite Tv Channels compared to my provider’s tv channels so that I can phone her and guide her to watching a favorite or interesting show. I keep a daily calendar of shows that might interest her.

Buy a label maker for labeling knickknacks, stuffed animals, anything that is not tied down!

Photographs: Take a picture of favorite items for when they go missing.

Batteries: I keep hearing aid batteries on me, it always seems to be that when we are out that the batteries suddenly quit.

Choose a hiding spot in her room (up high on a bathroom shelf) works well for me, and use it to put things for other family to access such as nametags for her clothing, should they wish to iron on their own label. (the laundry service at the home will provide the labels)

Buy fake wedding rings and exchange the real ones for the fake ones (should family or your mom be upset the day they go missing!)

Taking in Food: It is great to enjoy some takeout food together or a snack you have made, BUT never leave more food in the room then you can eat during your visit as I came close to inviting a case of food poisoning!

I try to get mom a “job.”  They say a sense of purpose goes a long ways towards having a long life. She used to deliver the seniors magazine within her apartment building, so I have enquired about her delivering mail, the activity calendar of events or the newspapers (with assistance of course) She has this idea that when the doors to the courtyards are open then they should have an OPEN sign on them. I pretty much ALWAYS pursue ideas that mom suggests. I find that when she is advocating for herself then I need to be paying close attention as this is her way of expressing her needs. I looked into purchasing an OPEN sign and she has volunteered to put the sign on the door (with assistance obviously)  although we never did get around to doing that.

Keep a bag packed for outings (it might contain extra puffer, Kleenex, water bottle, hearing aid battery, sunglasses, change of clothes, wallet,) I keep a rug in my car to cover my seat with in case we should ever have an accident (the bladder kind). While you are at, you may want to also have a small bag packed at home of your own personal items that you would need to get you personally through any emergency visit where your stay is extended  IF the nursing home is not in your town.

Post Signs: When other residents came into her room uninvited we posted a large “DO NOT ENTER” sign and a large STOP SIGN as a visual cue for others.

Whiteboard: My mom was used to having a whiteboard prior to her admission so we bought the peel and stick kind at Office depot and put it on the back of her door. We found it was best to just record the times of events that interested her vs putting ALL the activities the home offered on it.

Everything in it’s place: I TRY (Haha) to keep things in the same place and I FOCUS on what they look like so that when she calls me looking for something I can respond “chances are your glasses are in the blue eye glass case in your top drawer. Knowing that the call bell has an “orange” button on the end of it to push is very helpful! Knowing that the tv remote has a POWER button vs on/off is helpful when guiding her to use it.

 Hand Held DVD: Purchase a small handheld DVD player, you can set up a movie and walk out and you just recharge the machine next time.

Notes: I post large print notes on the walls of my mom’s nursing home that say things like “the nurse can be contacted 24hrs a day, Please do not hesitate to use your call button to call a nurse at any time” My mom would respond well to notes, and reads them over and over so an effective way to get a message across or a reminder is to write her a note. I even ask Doctors to do the same. She pays more attention to notes written on prescription pads. Eg Shirley I need you to do your best to eat more meals in a day.  Because she likes notes so much a diary and a sign in guest book are some of her favorite things. And one that says  “Shirley wears hearing aids!! Please ensure they are IN! AND  working!

Optometrist Labeling: I had an Optometrist label eye glasses with name and phone number for free. I ended up also using a bright nail polish on the arm of the eyeglasses so that I could spot them quickly.

THANKS ANN FOR YOUR GREAT CAREGIVER TO CAREGIVER TIPS!!! ~Sharon

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Looking Back at 2013!

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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.

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Remembering

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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

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Just a phone call away…

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I still remember the night we decided to take my delirious mother to emergency. Convinced there was no other option and no cavalry coming over the hill to save us, we really didn’t see any other options. That’s why I was so excited to see the development of this latest resource for caregivers. If that night, I could have picked up the phone and said, “Hey, this is what’s going on. What do you think?” Wow, that would have been really nice. 

So, it is with that sentiment that I share this brand new resource. Help really is only a phone call away:

“Caring for someone with dementia is a 24-hour a day job” say the Alzheimer Society of Ontario and the Ontario Dementia Network Toronto, ON, October 8, 2013 – The Alzheimer Society of Ontario and the Ontario Dementia Network are working with Telehealth Ontario to help family caregivers prevent crises when regular services are closed. Funded by the Ministry of Health and Long-Term Care, Telehealth Ontario resources have been reviewed and strengthened specifically to support family caregivers of persons with dementia. These services will help to provide better care to people with dementia being cared for in their home by caregivers. Telehealth Ontario will connect people from across the province with specifically trained nurses to offer dementia support, advice and referrals 24-hours a day, seven days a week.

“Family caregivers deliver the vast majority of care for the 200,000 persons with dementia in Ontario in their own homes,” says Kathy Wright, CEO of the Alzheimer Society of Ottawa and Renfrew County and a Co-Chair of the Ontario Dementia Network. “With agitation, confusion and wandering often occurring in the early evening, Telehealth Ontario’s after-hours support is a vital tool for caregivers managing stressful situations when organizations like the Alzheimer Societies are closed.”

“Individuals with dementia are twice as likely to visit emergency rooms and if admitted are much more likely to be stuck in hospital, blocking beds while awaiting long term care,” explains Dr. William B. Dalziel, Professor of Geriatric Medicine at the University of Ottawa and Co-Chair of the Ontario Dementia Network. “Telehealth Ontario adds to the resources so needed for individuals with dementia and their caregivers. Research shows that caregivers with education, counseling and the availability of Telehealth Ontario services could keep their loved ones with dementia at home 1.5 years longer.”

“We’re strengthening Telehealth Ontario services in order to provide more support to those caring for loved ones with dementia,” says Deb Matthews, Minister of Health and Long-Term Care. “By supporting family caregivers at home when they need additional help, we are helping to provide the right care, at the right time and in the right place.”

Caring for a person with dementia at home is a difficult task and can become overwhelming at times. “My personal ‘melt downs’ were often during long weekends when I did not have access to agencies….

“Some of my darkest memories are of those ‘after-hours’ needs,” shares a family caregiver.

Telehealth Ontario nurses will receive targeted training in dementia protocols to support the service. During regular business hours, callers will be referred to the local Alzheimer Society for help. Access to after-hours services for dementia caregivers is available by dialling Telehealth Ontario at 1-866-797-0000 after regular business hours, and during weekends and statutory holidays.
“Telehealth Ontario is helping build a robust province-wide support system specifically targeting the information and support needs of the families and friends who are currently spending 100 million unpaid hours caring for Ontarians with dementia,” concludes Kathy Wright.

For more information, or to book an interview with the Alzheimer Society of Ontario, the Ontario Dementia Network or Telehealth Ontario, please contact:

Pascale Guillotte
Director, Marketing and Communications
Alzheimer Society of Ontario
416 847-8922
pguillotte@alzheimeront.org
www.alzheimerontario.ca

About the Alzheimer Society of Ontario
The Alzheimer Society of Ontario and its network of local Societies across the province offer Help for Today through programs and services for people living with Alzheimer’s disease and other dementias and Hope for Tomorrow…by funding research to find the cause and the cure.
www.alzheimerontario.ca

About the Ontario Dementia Network
Established in 2009, the Ontario Dementia Network’s mandate is to provide leadership to the regional dementia networks in Ontario in the development of a comprehensive and well developed system of service delivery, education, and public policy in the field of dementia.
http://www.akeresourcecentre.org/DementiaNetworks
About Telehealth Ontario
Telehealth Ontario is a free, confidential telephone service Ontarians can call to get health advice or general health information from a Registered Nurse. http://www.health.gov.on.ca/en/public/programs/telehealth/

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Finding Hope in Gratitude

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Dementia and hope don’t really go together.

As I mentioned in my last post, I’ve been struggling a little lately coping with my Mom’s dementia. Nothing has really drastically changed, but in our latest visits she has been more distant, less aware and harder to find. I feel myself growing discouraged, fatigued and less hopeful.

In fact, I think the word “hope” is the issue.

In every other area of my life – with my work, my children, my friends – even if things are not the way I want them to be, there is something to look forward to. I can hope. But, when I look at Mom and where she is going – there is not much to hope for – I see nothing in her future but more layers of loss.

SO, today I am doing something to shake myself out of this funk - I am practicing gratitude. Maybe it will help – here’s hoping. Maybe you’d like to join me.

Although, Mom is not how we wish she could be, right now in this moment, there are things about her for which I am grateful.

1. I am totally and completely grateful for the staff in her long term care facility. Their care is person centered, when they speak with my mother – I can tell by the look in their eyes, that they “see” her – not just a bothersome old lady. They are funny, warm and approachable. They welcome my questions and concerns. When Mom is “off” they notice and are pro-active. Because of them, Mom is warm, well-fed, and safe. I am so grateful.

2. I am grateful for her big sunny single room with the little love seat for two and for the moments we can sit and cuddle in privacy and quiet.

3. I am grateful that her eyes still light up and a big smile crosses Mom’s face almost every time she sees me. She may not be exactly able to identify me every time – but she still knows me, loves me and feels loved in return. I am so grateful for that.

4. I am grateful for all the volunteers who come in and talk with Mom, sing, perform jamborees, preach and pray with her. I am grateful for the other residents who she enjoys their company and friendship – even her limited way – and the family members of other residents who have taken an interest in my mom. Thank-you!

5. Most of all, I am grateful that even though it can be heart breaking,  I have the gift of more time with Mom. I really am thankful for those moments of connection, love and intimacy. They are a gift and I am grateful for them.

Maybe, I won’t find hope in my gratitude, but I might just find joy. :)

~Sharon

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Good-night Guilt

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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.

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Living the Lived Experience

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Life can take some funny twists and turns.

I wasn’t sure how much I wanted to share about my latest twist and turn. I wrestled with mixing my professional-self and my Sharon-the-blogger-self until I finally decided – “Why not?”

Last month, I signed on for the task of creating a Virtual Lived Experience Network, working with the Alzheimer Societies for the South Eastern Ontario region. Without getting into the nitty-gritties, I am being contracted to help create a voice for people living through the experience of dementia and other responsive behaviours (either themselves or as care partners).

As I said, this is a very funny twist and turn in my life. It is also an emotional one because for so many long months when my mother struggled with those early stages of dementia, delirium and her future was unclear – I had no voice at all…and she most certainly didn’t either.

I don’t think it is possible to overstate how vulnerable a time that was. It is one of the most frightening memories I still carry from our ordeal – that no one seemed to be listening.

It is with great optimism and perhaps a sprinkle of idealism, that I now believe: people really were listening.

It is true our medical system is a confusing maze. At times health care services don’t work together or share each other as resources. Families are left standing the the hallway shaking their heads, not knowing what door to walk through. But, the more involved I get, the more I see that people are listening. More and more services are collaborating, working together, and doing their best to offer person centered and family directed care.

I was able to attend a local example of this recently at the unveiling of a new partnership name and logo for “Cross Roads to Care” – the co-location of the Alzheimer Society of Belleville, Hastings, Quinte, Community Care for South Hastings, Providence Care and VON. In December, all theses services will be under one roof in the Bayview Mall in Belleville, Ontario.

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Translation: when a person in need of care or their family shows up looking for services, there is a good chance they will go to the wrong door first. Before, these services would have to send them away – now they can re-direct them down the hall!

Imagine how much better of beginning this will give to people in need of care, support and answers. It makes me smile just thinking about it.

So, I’ve been a little busy lately. (Sorry for neglecting you). It is an exciting and humbling time, to be able to take a lived experience and personal situation so marinated in loss and pain and turn it to the greater good….what a blessing! (Mama would be proud.) So, Keep your eye out for the Local Resources Page. As I go along, I hope to add more local resources, encompassing not just my back yard, but the entire South Eastern Ontario region. I also hope to be able to add more information and resources that serve the entire province. Come back often and look around.

OH YAH!! and be sure to check out the 2014 Alzheimer Society of Ontario calendar. Mom and I are one of the families featured in it. (Which I think is pretty cool.)

What I have learned and continue to learn in being part of this online community, is that we need each other. We need to share our stories, listen to other people’s and support each other. It makes all our loads lighter when we do.

~Sharon

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