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Nightmares or the Orange Pill

Nightmares or the Orange Pill

I’m tired this morning. The lingering affects of my nightmares stays with me.

One of the characteristics of Frontotemporal dementia is sleep disturbances. In addition to this I have been diagnosed with REM sleep behavioural disorder. This “… is a disorder in which you physically act out vivid, often unpleasant dreams with vocal sounds and sudden, often violent arm and leg movements during REM sleep.”
Normally you don’t move during REM sleep. About 20 % of your sleep is spent in REM sleep, the usual time for dreaming, which occurs primarily during the second half of the night. (Mayo Clinic)

REM sleep behaviour disorder often may be associated with other neurological conditions such as Lewy body dementia, Parkinson’s disease or multiple system atrophy.

I have had this disorder for about four years; that means prior to my diagnosis of Frontemporal dementia (FTD).
The other distinct characteristic of this is that you usually remember the nightmare(s) unlike many dreams.
Although I had a diagnosis, I choose not to take any suggested medications to help the symptoms. About a year ago, that changed as my nightmares were more frequent and frightening.

My doctor put me on 0.5MG of Clonazepam. Yes, medication from the “pam family.” Clonazepam often used to treat anxiety is also the traditional choice for treating REM sleep behaviour disorder.

However, in people with FTD, benzodiazepines have been associated with an increase in behavioural challenges and impair both memory and pschomotor skills. Use can result in reduced inhibition and impaired judgement. Simply put Clonazepam should be avoided.

I’m sure you can see the conundrum. To take or not to take. That is the question!

My daily medication is taken via a blister-pack. The clonazepam is not included in it. Every night as I take my blister-pack medication, I have to also open up the pill bottle for it.

Last night I choose not to take it. This is the second time this week. Why not? I keep hoping to take less medication. I keep thinking maybe I don’t need to take it anymore. But I’m promptly reminded why I do need to take it. Without it comes the nightmares. Terrible nightmares.

Although clonazepam is not suggested for people with dementia, I’ve made a choice to include the orange pill in my daily medication. Without it, the monsters come out and I can be heared yelling “Help me….”

Mary Beth Wighton is a blogger living with Frontotemporal dementia. If you want to subsribe to her blog or get in touch with her for any reason, send her an email (mbwighton@hotmail.ca).

fdd8c873df2214bMary Beth Wighton

Blogger and dementia advocate

Why I work for the Alzheimer Society

Why I work for the Alzheimer Society

Elizabeth Barrie is a First Link® outreach worker for the Alzheimer Society of Oxford. She shares her personal connection to the disease.

What is your connection to Alzheimer’s disease?

My mom was diagnosed with Alzheimer’s disease when I was parenting three young daughters. I had to juggle the expectations of motherhood with the demands of supporting my parents as they navigated the uncharted waters of dementia.

Never one to complain or dwell on the negative, Mom continued to participate actively in her community, writing for the newspaper, playing the piano at church and helping to lead choirs.  Remaining active, socially and physically, was essential to Mom’s health and well-being throughout her journey.  In spite of the changes in her brain, Mom did all she could to care for her family – and what she couldn’t do, Dad did for her. Their 15-year journey with Alzheimer’s disease was a labour of love for both of them.

What were the initial warning signs that led you to believe your mother’s health was changing?

She began taking notes when she and I would have conversations over the phone.   When I asked her questions she would read from her notebook about the conversations she’d had with other family members rather than respond from memory.

Mom also began repeating stories and had difficulty finding words, which progressed over time.

Soon after her diagnosis, I remember finding Mom trying to open a can of soup using a hammer and nail. She didn’t recognize the manual can-opener in her kitchen drawer.  This was a stark reminder that Mom’s changing brain was going to make even smallest tasks harder to complete, especially in the kitchen.

What support, if any, did you access?

I remember the day I drove to the Alzheimer Society office without an appointment and entered feeling completely overwhelmed and scared. A woman on staff made time for me right away, answering my questions, validating my feelings, and sharing my tears.

I had held it together as long as I could, but when I reached my breaking point, I needed somewhere to turn with someone who would understand and could help.

The Alzheimer Society provided all that I needed and more.  I was sent home with resources to read and share with my family, tips to engage Mom and above all reassurance that we were not alone.

Follow-up calls and opportunities for myself and all the members of my family to access education and support came as needed.  This help proved invaluable over the course of Mom’s journey.

As a family, we learned to live “in the moment” with Mom.  We understood the importance of music, family, laughter and conversation, and we engaged Mom in as many ways as we could, for as long as we could.

When we were lacking information, the Alzheimer Society provided it for us. They shared helpful coping strategies and tips, lending a listening ear at the times when we felt depleted of strength. This was a gift.

Read more stories like Elizabeth’s.

elizabeth-barrieElizabeth Barrie

First Link® outreach worker

Alzheimer Society of Oxford

Tips and resources: making the most of Family Day

Tips and resources: making the most of Family Day

sharonWhen it comes to visiting Mom, I like the normal days, where my only expectation is to “connect” with my mom. The days I don’t like are holidays: birthdays, Christmas, Thanksgiving, Family Day – they all remind me of better times. I feel so overwhelmed by the Mom I have lost, that I don’t have the energy to “find” the Mom who is left behind.

On these occasions I enlist my family members or friends to come with me. I let them know I’m feeling low and I say, “I need you with me so I can face this without ruining it for Mom.” Usually, that is just enough to push me past the tough part and enjoy the visit.

Another thing is keeping it simple. The less elaborate the plans, the less deep the disappointment when she is not having a good day or doesn’t respond the way I had hope she would

Sharon Osvald, caregiver

Days like Family Day can be difficult. You never know whether your friend or family member is going to have a good or bad day. Regardless of what you have planned, following these tips can help improve communication for any visit:

  • Introduce yourself, even if it feels awkward.
  • Use humour and smile.
  • Don’t argue.
  • Go at her pace.
  • Use visual cues and gestures for direction.
  • Accept inappropriate answers or nonsense words. Don’t correct his ideas.
  • Don’t ask: “Don’t you remember?

 

Other resources for families

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother, Bruna was officially diagnosed with Alzheimer’s disease in January of 2011. The disease was not unknown to her family. Three of her sisters died of complications resulting from this creeping and subtle sickness, as well as her paternal grandmother.

Not long after the second time she had become disoriented while driving and her ever increasing lapses in recall, I decided to take her to visit her doctor. What if she ended up hurting herself, or worse, someone else? I could never forgive myself.

“Well Bruna, I think we’ll have to send you for more tests to figure out why your memory is failing you. Until then I don’t want you driving. It’s too dangerous for you and the people around you,” the doctor explained.

The ride home was awful. “Now I can’t drive anymore. You’d better be prepared to take me wherever I need to go because now I can’t take myself!” The decibel level of her voice rose with every word.

I pulled into her driveway, relieved to be there. My mother exited my van and slammed the door, uttering one last declaration of disappointment at how I had betrayed her. I was drained, yet I could only imagine how she felt – to know that her independence would be taken from her. To think that it would render her less able to look after herself with every passing year. This was the beginning of my mother’s journey with Alzheimer’s.

I cannot stress enough how I agonized about taking her to her doctor, but I knew that the longer we waited, like any serious disease, the less likely we would be able to treat it effectively. In retrospect, we were lucky, because I knew the signs. Even though she presented different symptoms, my aunt had Alzheimer’s years earlier and I saw the horrible process first hand.

The most crucial piece of information I can pass on is that the signs of Alzheimer’s can be different for everyone and that everyone – spouses, sons, daughters, sisters and brothers, need to be informed and aware of the possible risk. Knowing the signs and taking charge of the situation by helping your loved one to visit a health care professional if you suspect issues with memory is the best thing you can do for them.

My mother has been fortunate enough to receive care from many people and organizations in the community – healthcare professionals, community care services and the Alzheimer Society. Our local Alzheimer Society helped us understand the disease and assist my mother in living with it and managing her life. She is still living independently with some assistance and she takes medication which has slowed the progression considerably.

Many have helped to lighten the load. We have spoken to compassionate, supportive and patient individuals from the Alzheimer Society who are willing to give of themselves to assist us and educate us about where we can turn for help. And for this we thank them.

My mother is living independently with Alzheimer’s Disease and she refuses to be its victim. Know the signs and get checked out as soon as possible.

Learn more about:

 

edy_grazianiEdy Graziani with her mother, Bruna

How a diagnosis helped my mom

How a diagnosis helped my mom

scan0002At first, it was small changes. My mother was losing things and getting on the wrong bus. But then I began to notice more unsettling changes. She wasn’t taking care of herself, slept a lot during the day and was becoming even more confused.

I knew something was wrong. I took her to her doctor. We got the always shocking, but ultimately expected news. She had dementia.

I felt mixed emotions. But knowing the source of my mother’s difficulties was a relief. And with that diagnosis came my resolution to help my mother remain active for as long as possible. Because I knew that if she didn’t use the abilities she had left, she would lose them quickly.

As a first step, I got her on medication to help with her dementia. But I wanted more, so I began sending her to a local day program every day. And then I got help for myself, with a personal support worker provided by my local Community Care Access Centre and by sending my mother to respite care to give myself much-needed breaks.

And what a difference this has made for both of us. The doctors are amazed at how well she is doing.   My mom is happy. She has a great time at the day program where she eats well and gets mental and physical stimulation. She even regularly sleeps through the night, something that any caregiver knows is a blessing.

I have advice for anyone who thinks they or their family member might have dementia: see your doctor. The sooner you know, the sooner you can act. It made all the difference for my mother.

To learn more about early diagnosis, visit our website.

sharon

Sharon Roszel

Caregiver

Walk for Memories: meet Walker Kim Zuliana

Walk for Memories: meet Walker Kim Zuliana

Alzheimer’s affects me both personally and professionally. The Walk For Memories is a great way to gather many who are affected by this disease to help promote awareness, raise funds and to just support each other by sharing stories. Everyone is affected one way or another and with an aging population. This walk allows us to take the next steps to help cure Alzheimer’s disease or related Dementias.

I walk for my beautiful Grandmother Cecile Bertuzzi. She has always been an inspiration in so many ways. This woman would give the shirt off her back for anyone in need, she only gave love and affection, she was the best cook ever, she cleaned like no one could ever clean and she always made sure her family was taken care of.

My Grandmother may not remember me but I remember her and who she was as an individual as well as a Grandmother. When I am with her and she looks at me and says “Ohhhh you are so beautiful” or “Oh I love you”…those are my moments and wouldn’t change that for the world.

Thank you Walk for Memories for giving me the opportunity to participate in helping with a cure for Alzheimer’s disease and related Dementias.

To sponsor Kim or another Walker, or to participate by finding a Walk near you, visit the Walk for Memories website.

kimKim Zuliana

Walk for Memories Walker, Sudbury

Tips caregivers can share at a holiday gathering

Tips caregivers can share at a holiday gathering

The holidays are all about spending time with friends and family.  Including a person with dementia in these events is important because it helps them connect, through familiar faces and objects, to their past.  And create new memories too.

Including people with dementia in a social gathering, especially a large one, can be challenging.  The extra stimulation may be difficult to manage.

Most people with dementia still enjoy socializing.  Sometimes it is friends and family that may feel uncertain in these situations, or not know what to say or how to act.

To help ensure a fun family gathering, here are some tips to help both people with dementia and their families and friends:

  1. A nap in the afternoon can help some feel more rested for the gathering.
  2. Invite the person you are caring for to chip in:  get her to help prepare the meal with simple tasks, like peeling potatoes.
  3. Do limit the number of guests to around ten so neither of you are overwhelmed by this new situation.
  4. Limit loud music as it’s distracting – get the kids to wear their headphones!
  5. Make sure everyone sits at the table.Yyou can enjoy the fruit of your labours, and the person with dementia will also feel part of the group.
  6. Encourage family not to be shy. One-on-one chats will be appreciated by all.
  7. Ahead of time, share tips with the family to help minimize concerns and improve communication. Smiling and using humour are always delightful.
  8. Be aware! If the person with dementia appears restless or irritated, take her away from the party for a break.
  9. Kitchen parties are the best! Ask for her help with cleaning up after the meal.
  10. As the evening winds down, consider an activity better suited for someone with dementia, like looking through old family photos, which can stimulate reminiscence.
What I learned keeping home safe for my husband

What I learned keeping home safe for my husband

After my husband was diagnosed with Alzheimer’s disease, I decided to do everything in my power to keep him at home as long as possible. Home could help him connect to his past and maintain a sense of who he was.

I learned quickly that this decision meant I needed to adapt to the unique interests and abilities of my husband to encourage whatever independent skills he had left while making home a safe place.

For example, Reg always enjoyed fixing things around the house. For safety,  I kept his tools stored out of his sightline in drawers and cupboards. But I did allow him to continue using them so long as I supervised.

Another tip I picked up helped Reg find his way home. His favourite colour was always bright red. So to help him recognize his house coming home from a walk or drive, I painted the door that colour.

Inside the house, I didn’t have to worry as much about mobility as he was physically able to get around. But I did need to make sure that the stairs and hallways were clutter-free. If he was walking around and not paying attention, I wanted to make sure there was nothing for him to trip on.

Although these approaches worked for a time, I had to continue to make changes as the disease progressed. Keep in mind that abilities like reaction time, balance, sight, memory, judgment and insight deteriorate in a person with dementia and you will need to adapt the living environment to those changes.

For more help about keeping the person you care for safe around the home, I encourage you to visit the Alzheimer Society of Ontario’s website. Their home safety checklist is a great place to start in developing your home safety plan.

reg-togetherSusan Bithrey

Caregiver and Champion for Dementia

Ten caregiver tips for Thanksgiving dinner

Ten caregiver tips for Thanksgiving dinner

I love having the family over for Thanksgiving. It’s a treat to catch up and exchange stories. But I’m also a caregiver and those duties can never be ignored. My mother has Alzheimer’s disease and lives at home with me.

Including a person with dementia in a social gathering can be challenging, but also rewarding. Although my mother enjoys socializing, she isn’t the only one who has difficulty communicating with others. Sometimes friends and family feel uncertain of what to say when speaking to someone with dementia.

To help ensure a fun family gathering, here are some tips to help both people with dementia and their families:

  1. Have her sleep in or take a nap in the afternoon to make sure she is rested for the gathering.
  2. If she is still able, get her to help prepare the meal with simple tasks, like peeling potatoes.
  3. Limit the number of guests to around ten so she is not overwhelmed.
  4. Limit loud music as it’s distracting
  5. Make sure she sits at the table to help her feel part of the group.
  6. Encourage family not to be shy. My mother always enjoyed when people spoke to her and not just the group.
  7. Share tips with the family to improve communication, like being aware of their body language, smiling and using humour.
  8. Be flexible and respond to mood changes. If she appears restless or irritated, take her away from the party for a break.
  9. Ask for her help with cleaning up after the meal.
  10. As the evening winds down, consider an activity better suited for someone with dementia, like looking through old family photos, which can stimulate reminiscence.

 

For more help for mealtimes, visit our website.

sharonSharon Roszel

Caregiver

Caregivers: take care of yourselves

Caregivers: take care of yourselves

My name is Susan Bithrey. I am a caregiver.

My life has been transformed since my husband Reg was diagnosed with early-onset Alzheimer’s disease.

In September, which is World Alzheimer’s Month, we learned that 35 million people around the globe have a diagnosis of Alzheimer’s disease or another dementia. But behind these diagnoses are those who are thrust into the role of caregiver. A new report from Alzheimer’s Disease International highlights their ever growing ranks and how caregivers worldwide lack proper support.

If you took up the mantle to care for someone with dementia , thank you! But in drawing attention to important issues involving caregiving, I encourage you all to take care of yourselves. Otherwise, you’ll become stressed and end up with illnesses of your own.

You need to keep in touch with friends and family. A quick coffee with someone did much to restore my good spirits when I was feeling isolated. Yes, personal time is hard to come by, but social breaks are so important.

Join a support group offered by your local Alzheimer Society. They are amazing for providing a space where other care partners join me to talk about the ways we all cope with our spouses’ dementia. Sometimes, to share is to heal.

Finally, take care of your health. Eat well and exercise as much as you. Get the person you care for involved as well. I have worked hard to keep our days filled with activities that will keep us fit and outdoors as much as possible, and we are both much better off because of it.

To close, I would like to call on anyone who has a friend or family member providing care to do something for them. Offer to help with some household chores, to look after their family member for a few hours or just call to offer a kind ear. Often it’s the smallest gesture that can make all the difference.

Want to learn more about the Alzheimer Society of Ontario’s World Alzheimer Month Campaign? Visit our website for further details and what you can do to help people with Alzheimer’s disease and their caregivers.

reg-togetherSusan Bithrey

Caregiver