Volume 20, Number 4

Which Me Am I Today? Excerpts from A Blog

By Wendy Mitchell

am 59 years young, live happily alone in Yorkshire, England, and have 2 daughters. I continued to work full

time in the National Health Service until the end of March 2015, when I chose to take advantage of early retirement to enable me to enjoy being me while I’m able. I have never ‘tweeted’, ‘blogged’, or ‘facebooked’ in my life, but since I was diagnosed with early-onset Alzheimer’s, everything else has changed in my life, so why not this?

I started this blog to allow me to write all of my thoughts before they’re lost. I have a calendar that takes care of the future, but this blog serves as a reminder of what I’ve done and said in the past – it now serves as my memory. It will hopefully convey that although we’ve been diagnosed, people like me still have substantial contributions to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that de-

Fall, 2015 – Winter 2016 mentia throws at those diagnosed with the condition. Living well with dementia is all about adapting. What I don’t want is sym-pathy. What I want is simply to raise awareness.

Early Diagnosis, New Beginnings

On July 31st, 2014, I sat in the consultant’s room and received the official diagnosis of early-onset Alzheimer’s. It wasn’t a sur-prise, however, there’s always this slight

hope in the back of your mind that they’ve made a mis-take. But, it wasn’t to be. Some people may not want to know they have dementia. I was actually re-lieved to have a diag-nosis. It meant I could finally bring closure to all the un-certainty, to all the “what ifs’, ‘buts’ and ‘maybes.’ It enables

you to look at life from a new perspective and to plan and take up challenges that might otherwise never have crossed your path. For example, talented researchers may be on the brink of a new break-through. An early diagnosis has given me the opportunity to go on medication, which may give me long enough to benefit from such discoveries. It has also given me the opportunity to sit down and talk honestly and openly with my daughters (continued on page 2)

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Wendy with her daughters, Gemma and Sarah

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Which Me Am I Today? (continued from page 1)

and plan my future, which in turn has re-lieved them from having to make those difficult emotional decisions around my care and future treatment. Receiving the diagnosis was just as difficult for them as it was for me, but we’ve supported and protected each other through this. It must be so difficult for loved ones to feel they’re making the ‘right’ decision if no discus-sions have taken place. My daughters are not just my rock, they’re my mountains with their love and support.

What Does Dementia Feel Like?

Every day is different. Some days it feels like Alzheimer’s has never entered my life. On bad days, it’s like a fog descends on the brain and confusion reigns from the minute I wake up. I compensate for not having much short-term memory by hav-ing my phone alarm set to go off when it’s time for medication or for appointment reminders. I have a monthly and weekly calendar and reminders on my iPad. I can’t drive anymore, so I walk everywhere, and if I need to go further, I take public transport. My way of dealing with confu-sion is to tell myself it’s the disease and the fog will eventually clear. So I’ll just sit quietly and wait. It’s a bit like a game of chess – you sit and wait for your opponent to play and then you try to outmaneuver.

Not being able to find the right words is a daily occurrence. I used to get frustrated and annoyed at this. But it makes the dis-ease seem so much worse if you let it get to you. If I forget peoples’ names, it’s an-noying but I now think, ‘what does it mat-ter?’ and simply ask them again (and again) and hope they understand. If they don’t it’s their problem, not mine.

I’m sure there could be a lot more nega-tives if I thought about it, but luckily I’ve probably forgotten them! Bonus!

The Advantage of Silence

I always used to want background noise - whether it be music, television, radio. But recently I’ve found my brain prefers si-lence. It doesn’t have to compete with background noise and it can function bet-ter. For me, to no longer be able to do 10 things at once mustn’t be seen as a weak-ness, it’s simply an adaptation which has to be accepted in order to function better. What does it matter that I can’t listen and write at the same time? What does it mat-ter that I can’t answer the phone and con-tinue to do something else? What does it matter if I can’t talk and follow a pro-gramme on the telly? I now love to walk, read, write, talk or simply listen with no added distraction in the background. It’s amazing what you hear when your brain isn’t confused with other things.

The Importance of Time

Some days there’s a desperate panic to get everything said or written before I forget. I need much more time to get myself sorted. I get confused easily if I try and go at normal speed. Often all we need is more time. Please consider that if you have a loved one with dementia. What does it matter if it takes me an hour to do something you can do in 10 minutes? Don’t be tempted to do it for me simply because it’s quicker, as that is disabling me before I’ve lost the ability to do that task. Go off and do something else for an hour while I’m taking my time to do some-thing.

New Ways of Doing the Norm

Reading is something I’ve always loved, yet it’s becoming impossible to read a book normally. The trick is, I now read differently. Clever writers write in such a way as to have a natural breaking point every couple of chapters. As long as I sense when I’ve reached that break, I can pick up the book the following evening and continue to read as though it’s a new (continued on page 3)

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Which Me Am I Today? (continued from page 2)

start. It does mean you have to be more selective – for example, ‘whodunnits’ are a bit of a no-no as you can’t remember the original crime – ha! However, short sto-ries are brilliant.

I was also surprised to find that I can’t watch new films. The concentration needed to watch a 2-hour film just isn’t there any more and you annoy those watching it with you when you keep ask-ing, ‘Who are they?’ and ‘Where did they come from?’ But I can watch old films I’d watched before I had dementia. I still can’t remember what’s happened but it’s as though the familiarity is deep in the subconscious and it’s very satisfying to watch all the way through without the stress a new film creates.

Television has taken a different turn. I used to enjoy watching soaps, but now I get easily distracted and can’t follow what’s happening. I can’t watch a series that requires you to remember past infor-mation. The programmes I enjoy now are ones where there are things to look at – house programmes where I can look at the houses; gardening programmes where I can look at the gardens. Moral of the tale – don’t give up when things no longer seem possible.

Learning to Live Differently

Living with dementia is all about adapting – if you accept this, it makes it easier. People often say to me that I don’t look like I have dementia. I’m not sure what I’m supposed to ‘look like’. But I live well even if it takes twice the effort to do things, because if that’s what it takes, then that’s the adaption I have to make. I can’t prevent this disease, but I can join demen-tia research to enable me to make a valua-ble contribution to the lives of future generations. Research will lead to new treatments and hopefully the elusive cure,

but only if we can encourage people to see the value they provide to society and their children by taking part in research now. I refuse to dwell on what I can’t do. If someone newly diagnosed asked me what advice I would give them it would be not to panic at the diagnosis. Adapt and find new ways to compensate for the parts of you that don’t function as they used to. Don’t give in! Editor’s note: Since the time of her diagnosis, Wendy has been an exceptionally active advocate for people with Alzheimer’s and an educator of professionals and the public about the experiences and needs of people living with dementia. She gives talks in her community, attends conferences, participates in dementia advisory groups, and is helping to advance awareness. To read her blog, see:

https://whichmeamitoday.wordpress.com/blog/ You can also email Wendy directly at: wendy7713@icloud.com

HELPFUL RESOURCE

Living Safely is a booklet in the “By Us For Us” guides pub-lished by the Murray Alzheimer’s Research and Education Pro-gram (MAREP) at the University of Waterloo in Ontario, Canada. This series of excellent resources is written BY and

FOR persons living with dementia. This guide offers tips and strategies to understand safety concerns related to driving, safety at home and in the community, personal identification and use of technology, health and medication, physical and financial safety, and living alone. To view this guide and the whole series of guides, see the MAREP website: https://uwaterloo.ca/murray-alzheimer-research-and-education-program/people-living-dementia

Click onto By Us For Us series of guides.

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Brightening Up The Winter Blues

n many parts of the world, winter brings shorter days, limited sunshine, and challenging weather that can limit

one’s social activities. These factors can increase risk for depression. Depression can cloud thinking, impact on sleep, and worsen memory loss. So, if you feel more discouraged or low-energy in the winter, you are not alone, and there are ways to brighten up the mood.

If you live in cold climates that make it harder to get out, stay connected with family and friends by using innovative tools like Facetime or Skype to have video calls on your cell phone or computer. While it’s not the same as in-person conversations, these options can be rewarding and provide a great way to see friends and family and stay connected.

Exercise is very important for reducing depression and living well with dementia. If winter weather conditions make for lim-ited outdoor exercise, keep moving in-doors! Turn on the music and dance; get some light weights for indoor strength training (consult with your doctor or physical therapist about the best way to use light weights at home); or if you have an indoor staircase, walk up and down it a few more times a day, but make sure to hold the rail and watch your balance.

If grey days get you down, consider using special light bulbs or light boxes in your home that can make up for lack of natural sunlight. Getting adequate light during the day also helps to maintain normal sleep patterns at night.

People with Alzheimer’s are at risk for los-ing initiative and their “get up and go.” This problem can worsen in winter. It’s too easy to sit on the couch all day. Con-sider starting in on a new hobby or indoor project. Sort those photo albums; record your life stories (there are a number of fun books to help you do this or you can talk into a tape recorder); get out the jigsaw or crossword puzzles; write a letter to a friend; play cards or board games; clean out a desk drawer; finish that knitting project; watch a funny movie. You choose, but try to think of small things to accomplish or enjoy each day so you can continue to feel productive and engaged.

When you’re feeling down, sometimes your thoughts can get gloomy, too. You may have more negative thoughts, or experience lower self-esteem. Examine any discouraging thoughts that may be contributing to your depression and try to replace them with more hopeful ones. Keep a gratitude journal of what went right each day instead of what went wrong. Stop watching the news for a little while and try to surround yourself with more hopeful reading material or lighter television viewing content.

The following are some tips from people with Alzheimer’s about managing the blues whenever they arise:

“I’ve lost some self-confidence and I’ve found that it can reduce my depression to ask for help and to have a team.”

“Count your blessings. Think about what you can do and focus on those things. Make a list of your strengths.” “I sing to myself when I start feeling de-pressed.” (continued on page 5)

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Winter Blues (continued from page 4)

“Staying social in whatever way you can helps with depression.”

“I have to talk to myself pretty strongly when I get down. I think ‘you don’t want to do this to your children.’ It’s hard on them to see me get low.” “I make sure to just get out of the house when the weather lets up. It reduces my stress, gets me connected to the world a little more, and gives me a boost.”

“Coming to a support group reduces my depression. We communicate how we handle things and we laugh. It helps with acceptance to hear others talk about their limitations because then I know I’m not alone.”

“Have a bragging session! Think about what you are proudest of in life – about what you’ve accomplished and not just about what is not going right. Write down your biggest brags!” Winter will pass and spring will come. However, if the blues are persistent, are changing your eating patterns (eating too much or too little), causing too much or too little sleep, contributing to irritability or tearfulness, or resulting in very limited “get up and go”, talk with your doctor about the evaluation and treatment of possible depression. Sometimes our own home remedies and attempts to manage the blues are not enough and that is no one’s fault. Care partners are also at risk for depression and must seek support and medical help, if needed.

Questions to consider:

What coping strategies do you use to deal with depressed or discouraged feelings?

How can others help you when you are feeling down?

RESEARCH UPDATES

Alzheimer’s Disease to be a Federally- Funded Health Priority for 2016

n December 18, 2015 President Obama signed a bipartisan-supported

law which dramatically increased funding for the National Institutes of Health (NIH) including an allocation of 350 mil-lion dollars specifically directed to the Na-tional Institutes of Aging (a branch of NIH) for research into Alzheimer’s dis-ease. This represents a 33% increase in funding for Alzheimer’s and is an extraordinary opportunity to advance essential research into the cause, preven-tion, treatment, and ultimate cure of the disease. Previously, a great deal of scien-tists’ very promising Alzheimer’s research could not be funded due to limited re-sources. Scientists and clinicians are now being encouraged to submit grants for funding in 2016 and we expect to be able to report on a wide variety of promising research advances in the years ahead!

People with Alzheimer’s at Risk for Increased Social Isolation

ecently the Alzheimer’s Society in the UK reported findings from a survey of

300 people with dementia that 64 percent of the respondents felt isolated from friends and family following a diagnosis. The survey also found that over half (54 percent) of people with dementia re-sponded that they were now taking part in very few, if any, social activities. Approxi-mately half of the respondents said they would feel more connected if they could see family and friends more often and have someone to help them participate in activities and hobbies. This finding sup-ports the importance of discussing this topic with people with dementia and creating strategies with families, friends, and communities about reducing risk for social isolation.

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Counseling People with Early-Stage Alzheimer’s

An Interview with Author and Counselor

Robyn Yale, LCSW

hat are some benefits of counseling for a person with early-stage Alzheimer’s disease?

Counseling offers a person education, emotional support, and ways of learning to cope with memory loss and other symp-toms. Through the counseling experience, a person learns to focus on remaining strengths and look at new opportunities for activity, relation-ships, and continued purpose in life. Often a newly diagnosed person hasn’t had a chance to ask questions or process their feelings and reac-tions. Gaining an under-standing of Alzheimer’s disease (AD) can be help-ful and can assist with coping and being proac-tive.

This book, Counseling People with Early-Stage Alzheimer’s Disease – A Powerful Process of Transformation pro-vides a comprehensive framework that identifies the connections between the emotional adjustment, practical coping needs, and lifestyle issues faced at this point in the illness, and addresses them in an integrated way. For example, someone who is losing their driver's license might be very upset about it, but also needs to understand the reasons this is happening, necessary steps to take, and alternatives for getting along without driving.

What might be some of the emotional needs of a person with AD?

Just like anyone facing any other illness, a person dealing with early-stage AD may be afraid, ashamed, or overwhelmed by all the changes it causes. One's sense of iden-tity and self-esteem can be challenged. The counselor can be a calm presence who respects and validates these concerns. The counselor can also advocate for the person to participate in family discussions and decisions so that problem-solving about daily matters and planning for the future can occur, as needed. Through counseling, a person might also be able to be connected with early-stage programs in the community as a way of meeting oth-ers, sharing coping strategies, and reduc-ing isolation.

In your personal experi-ences counseling people with early-stage AD, what are the greatest chal-lenges and rewards? Each person has a different pace and process of ac-ceptance. It can be chal-lenging to stay present and not try to rush or steer the process too much. The counselor needs to work with any memory or com-munication difficulties in the sessions, using special-ized communication tech-

niques helpful to people with dementia. It can also be difficult when there are limited early-stage services in a person’s commu-nity to refer them to for further support and engagement. So we always need to advocate for a comprehensive array of community-based support and specifically programming geared to early-stage AD.

However, it is very rewarding to see peo-ple blossom in a transformative process, as the book's title describes. Many are able to go from feeling that there is nothing left

(continued on page 7)

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Counseling (continued from page 6) to saying, "I'm still here", "I still matter", or "I may need a little extra time or help but I can still be involved in that." I've seen people form strong partnerships with family members, develop new friendships and talents through early-stage programs, and find ways to contribute to their communities or to the Alzheimer's field through volunteer work. Doors and possi-bilities can open rather than close when someone has guidance and support. Your book mentions that there are not many practitioners who specialize in counseling people with Alzheimer’s. Why is this and how do we change that?

There is still a stereotype that there is not much to offer people with AD, a lack of awareness that counseling can be helpful, and little training available to profession-als in these unique counseling issues sur-rounding early-stage AD. In my first book (Developing Support Groups for People with Early-Stage Alzheimer's Disease: Planning, Implementation, and Evalua-tion) I pioneered an early-stage support group model that, over the years, became widely replicated internationally. In the beginning, those support groups didn't exist either, but now they are quite main-stream.

I'm hoping that in a similar way, people will read this new book, become excited by it, and use the model so that the service will expand. One counselor’s feedback speaks to how gratifying the process can be: “Counseling one of our participants was one of the most profoundly moving experiences of my professional life; I felt privileged to witness her capacity for ac-cepting her Alzheimer’s and continuing to live her life with joy. To just be with her while she panicked, surrendered, and then found her way back…..”

What has been feedback from people with early-stage AD who participate in this counseling process?

This counseling model was the result of grant funding from the U.S. Administra-tion on Aging’s Alzheimer’s Disease Innovation Program to the Georgia Divi-sion of Aging Services. The Georgia Chap-ter of the Alzheimer’s Association con-tracted with me to develop and implement the program. Eight weeks of counseling was provided to seventeen people by the project staff, Suzette Binford, Susan Formby, and Janice Adams. A formal evaluation was conducted by the Georgia Health Policy Center. Here are some of the quotes from the project evaluation:

“I think this counseling is very im-portant, because you need someone to talk to when you get this diagnosis – but very few people really understand it or what it’s like to go through it.”

“My greatest loss was feeling that I could no longer contribute to my family. You showed me how to celebrate even small accomplishments by writing them on a calendar and seeing all I really do in a week. Thank you for making me feel like a man again.” “Thank you for letting me talk about my feelings and fears in my own way. My family loves me but often finish my sen-tences and don’t really listen to me. You truly understand and offered new ways to think about myself and my future.”

“You get your diagnosis and a prescrip-tion, and the doctor says to come back in six months. So you’re left thinking, ‘Now what?’ It’s a very scary feeling. The coun-seling has been tremendously helpful, in-formative, and reassuring to me, and I hope it will become available to more people in my situation.”

Ms. Yale’s book is available at Health Professions Press: www.healthpropress.com .

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Perspectives is published by Shiley-Marcos Alzheimer's Disease Research Center University of California, San Diego 9500 Gilman Drive- 0948 La Jolla, California 92093 Phone: 858-822-4800 Email: lsnyder@ucsd.edu Editor: Lisa Snyder, MSW, LCSW Editorial Advisors: Staff of the Shiley-Marcos Alzheimer's Research Center Perspectives is published quarterly and is supported by the National Institute on Aging grant P50 AG05131. Copyright 2016. Electronic formats may be printed for personal or professional use, but please do not reprint newsletter articles for other publications without permission. Electronic subscription is free of charge. All articles, unless otherwise cited, are written by Lisa Snyder, LCSW. For citation purposes, refer to the article author, title, and the newsletter’s complete name.

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