AlzAuthors Celebrate Three Years!

Earlier I wrote how June is Brain Awareness Month for the Alzheimer’s Association.

Today I would like to partner that with AlzAuthors three-year anniversary. For those of you not familiar with AlzAuthors they are an amazing group of writers with a common thread: dementia and Alzheimer’s.

There are many books on the website helping caregivers for many situations not just dementia.

I would like to share with all of you our third anniversary celebration by inviting you to check out:  https://alzauthors.com/2018/06/06/2018-alzheimers-and-brain-awareness-month-book-sale-giveaway/

I’m very excited to be able to be a part of this talented group of authors. Be sure and sign up for the raffle! All books are discounted for this anniversary celebration from June 6-12. Don’t miss out!

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June, Brain Awareness Month

Many of you associated with dementia or Alzheimer’s are familiar with June being Brain Awareness Month.

If you’re a Caregiver you’ve probably, at one time or another, have become involved with the Alzheimer’s Association to help bring awareness to your community. 

I have been involved with The Longest Day and The Walk To End Alzheimer’s and I can tell you it has been an important part of my life to help bring awareness. It is people like you and me, caregivers, that help others understand the enormity of this crisis Alzheimer’s disease.

Anything you or your family can do that can help bring awareness is crucial. It doesn’t matter how large or small you present it. The idea that you’re helping is all that matters.

Put on your PURPLE this month and start talking to people, get out and join a walk helping to #EndAlz, look on the Alzheimer’s webpage and see all the opportunities that are available and sign up for one or two or as many as you want!

Together, we can partner in helping to End Alzheimer’s disease!

Why?

How many times have you asked “why” is this happening in my family? Why is this happening to me? Why doesn’t this happen to other people and not those I love? Why am I having to be the sole caregiver? Why doesn’t the rest of the family step up and help out?

These are all legitimate “why’s”. Why? indeed. . .

I wish I knew the exact answer to all these “why’s” but I don’t. And quite honestly, we’re not expected to know why any of these things happen.

As Caregivers we get especially frustrated with family members who don’t want to help out with the loved one who has some form of dementia.

Excuses you might hear are, I live too far away and you’re in the same town as Mom/Dad; you don’t have a full time job and I do; I have kids still at home and can’t get away. The list can go on and on with all sorts of excuses. The bottom line for all of these excuses is DENIAL! Some might not agree with that, but it’s not uncommon for family members to do little or nothing because they just cannot handle the fact that someone in their family has a form of dementia. It’s easier to make excuses than it is to accept the cold hard facts. That in turn places the burden on YOU! Why?? Why?? Why??

I have experienced the big “why” in my life more times than I would have liked. I never got the answer to any of those “why’s”.

As human beings we are just supposed to be BE-INGS, nothing more nothing less. We were not created to have the answer to every single “why”. If we were, wouldn’t that make us a super human, someone who knows all and can give the “why” its definitive answer?

Yes, it’s normal to ask “why” because we are devastated by the diagnosis the doctor just gave or maybe it was something your loved one did that was really out of the ordinary bordering on just downright crazy, or something you’ve never expected to hear about your parents, siblings or other relatives.

After the initial shock wears off and you’ve spent days asking “why” our family what could we have done to prevent this? It’s time to pull yourself together and stop asking “why” and move in the direction of how to become a full or part time caregiver. There are so many resources available today providing the help and guidance you are going to need. Don’t be afraid to seek out different places, somewhere you feel connected and seem to get the best information for your individual situation.

When you’ve found the right resource(s) and begin working with professionals in the field of dementia, you will find there are many questions you have about the disease that CAN be answered. For instance, why is my loved one acting this way? Why is she/he agitated? Why can’t they sleep? Why do they have a hard time with their motor skills or verbal skills? These are the “why’s” that CAN be answered. Instead of trying to figure out “why” this is happening to me, etc., get the answers to why your loved ones behavior is changing. That’s more productive and less stressful than trying to figure out “why” did this happen?

You’re not alone in this role as the Caregiver. Reach out and seek help for you and your loved one, then you just take one day at a time.

The big “why” will probably never go away because that’s just the way life is; remember, we are only human! Use that energy of yours to learn about the kind of dementia your loved one has and then move forward from there. Most of all make sure you continue to show your unconditional love to the person with dementia. Love is something everyone can feel whether they have dementia or not.

Is There More I Can Do?

Lately I’ve been thinking a lot about what else I can do to be of help to those of you in the role of a caregiver. Certainly encouragement is needed as well as empathy and strength. Yet I feel there’s more I could or should be doing.

In this blog post I want to extend an invitation to all readers to ask questions about their situations. Is there anything you are having a hard time figuring out? Is there something you feel you’re not doing right? What is it that you are struggling with as a caregiver?

I’m not an expert by any means and I don’t have a medical degree. What I do have is personal experience as a caregiver that lasted eighteen years. I believe that accounts for something. I will do my best to answer whatever questions you have.

So please, if I can give you a little peace of mind and some encouragement along your journey, ask away.

My motto is: You Are Not Alone!

November-Alzheimer’s Awareness Month

November is Alzheimer’s Awareness month.

This awareness brings to the forefront information regarding research, any new medical news, new medications in the works, alternative medicine ideas, helpful lifestyle changes and more. Just take a look at www.alz.org where you will find a plethora of information not only about the disease, but the “latest” in the quest for a cure.

Just last month I joined a local fundraising team, not only to raise money, but to also join others to Walk To End Alzheimer’s. If you’ve never engaged in any of the events the Alzheimer’s Association puts on, you should give it a try. This wasn’t my first walk, but it has been several years since I joined one. I was so encouraged by the number of participants and the deep desire to want to help support finding a cure for this despicable disease. We must come together as a whole and use our voices to get through to Congress about how important funding is to continue the amount of  research needed to make a breakthrough. The latest information on all of this can be found at www.alz.org.

November is also the beginning of the holiday season starting with Thanksgiving.

Holidays cause enough stress in ordinary daily lives, imagine what it’s like for Caregivers and their families! Here are some ideas I found from the Alzheimer’s Association to help you during the busiest time of the year:

Keep It Simple

  • Make lists to stay organized; it reduces stress/anxiety
  • Try to find humor in the day – laugh as much as possible
  • If you’re hosting a holiday party keep it small

Enjoy The Moment

  • Play holiday music
  • Watch a holiday movie
  • Drive around neighborhoods to see holiday lights
  • Decorate as little or as much as makes you happy

A Gift To Yourself

  • Get enough sleep and eat well
  • Do not overextend yourself
  • Give yourself the gift of a walk or time with friends or family
  • Ask for help

I’m sure some of you are saying to yourself, “A gift to myself? Really?” Yes! There are plenty of resources to help you find some time for yourself; take advantage of those, especially during the holidays.

May you all have a Blessed Thanksgiving!

 

 

One Is The Loneliest. . .

I’ve heard caregivers say how lonely it is to be a caregiver.

For people not involved with caregiving, or know of a caregiver, they probably don’t understand how a person is lonely in the role of caregiving. After all, you’re with your loved one most all of the time if not all the time.

Caregivers have a challenging role in life. They aren’t just caring for a loved one, they’re also still trying to (hopefully) take care of themselves, or maybe they’re still raising a family and working both ends of the spectrum.

Even people who are not in a caregiving role can be lonely for various reasons. However, for caregivers it’s a different kind of loneliness.

Caregivers often find themselves in a one-sided conversation.

Their loved one is no longer able to converse, and if they do try to speak, their words have become jumbled in ways that make no sense. Even sitting and watching a movie or t.v. show there is no interaction or discussion about what’s going on in the show. Lonely.

How are you supposed to go through each and every day as if you are living alone? Lonely.

Starting the day with helping your loved out of bed, getting them dressed, preparing their breakfast and talking about the beautiful day ahead. Lonely.

Taking your loved one on an outing to get some fresh air and pointing out the beauty of nature and hearing the birds sing. Lonely.

I could go on and on with more examples, but I don’t think you need anymore. If you’re a caregiver you already know.

When I said earlier: ‘For caregivers it’s a different kind of loneliness’, it’s obvious from the examples.

The person you’re caring for cannot perform the normal tasks of someone who is not afflicted with dementia. When you lose that “normalcy” in the family, it becomes a sad and grieving loneliness. Even if you occasionally have visitors it’s still lonely because it’s not about having people visit. It’s about having lost the person you have loved and cherished for so many years. Physically they are there, mentally they are not. That is lonely!

As I was writing this, an old Three Dog Night song came to mind: One Is The Loneliest Number.  If you think about the lyrics it’s similar to how a caregiver feels.

Please know, that as a caregiver there are many emotions you will experience, feeling lonely is one of them. Keep surrounding yourself with positive upbeat people. Find humor in as many things as possible; laughter is truly the best medicine.

Take a walk down memory lane with your loved one. Show them pictures of earlier years when they were active and engaging. If you have home videos/movies show those and watch them begin to smile. Play music they used to love and enjoy.  I promise you, there will be a trigger in their memory somewhere along the way that will bring them back, even if it’s only for a glimmer of a moment. It’s not only good for them, but it’s monumental for you too!

And keep this thought. . .

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Physical Touch and Dementia

Many of us enjoy the physical touch of another person whether it’s from a parent, spouse, sibling or a best friend. We all need some physical touch in our lives.

It’s been proven that even babies who are denied any physical contact will not survive and if they do survive, they have emotional problems.

A person with dementia is no different than an infant. They, too, need physical touch because it’s demonstrating LOVE to them. Whatever stage of dementia they are in, they still need and want that touch of love. You might be wondering how would they know if they need it or want it? From my own personal experience I can tell you whether I just touched the hand of my mother or embraced her, it put a smile on her face. You see it in your loved ones eyes. The saying, “The eyes are the window to your soul”, has merit.

As a Caregiver you learn day by day what works and doesn’t work with your loved one. There might be a particular day you try touching and you get a negative response. Don’t take it personally, they might be having a tough day and that particular moment isn’t the time for touching them. So what do you do? Just sit with them. You can try reading to them, listening to music with them, or do nothing at all. Just having you there and being present sometimes is enough for someone with dementia especially if they have trouble with their verbal skills.

I’ve mentioned this before, but always approach a person with dementia from the front making sure you are at eye level with them. Speak in a calm voice, smile and then reach out to touch their hands.

If your loved one is in the middle stages of dementia never just walk up and try to embrace them because it can frighten them. I say this because in the middle stage of dementia a person can experience delusions and paranoia so trying to embrace them like you’ve been accustomed to doing, might not work and can even agitate or frighten them. Again, if this happens, don’t take it personally, they don’t know any better.

Of course, this doesn’t mean you’ll never be able to hug your loved one again. On the contrary. I’ve seen with my own mother that in one moment I wasn’t able to touch her and in the next she was holding my hand. There’s always surprises when you’re caring for someone with dementia! You just never know what they will do or say (if they are verbal) next. Be prepared for ANYTHING!

Never let any negative behavior keep you from extending your loving touch to your loved one. They might not understand what you say to them, but they can still feel what you’re trying to convey. Just because a person has dementia doesn’t mean they don’t have feelings, they do! So whether you’re touching or talking to them, do it with LOVE.

“Love is patient, love is kind.” 1Cor 13:4 (paraphrased)  “It always protects, always trusts, always hopes, always perseveres.” 1 Cor 13:7

 

Focus

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Where is the focus of a caregiver? Where should it be?

You might be thinking, “That’s a crazy question. Of course the focus is on my loved one.”

It’s not so crazy of a question if you really give it some thought.

Yes, part of the focus is on the person you’re caring for. But shouldn’t the focus also be on YOU?

Think about it:

  • Are you staying healthy?
  • Are you getting enough sleep
  • Are you taking a day for yourself (ever)?
  • Is your day filled with fear, negativity, resentment and all the “what if’s”?

If you answered “no” to the first three and “yes” to the last point,  then you need to start doing some focusing on you.

In my opinion, caregivers have one of the hardest, unrewarding and challenging job on the planet! There’s (usually) no income, no incentives, no bonuses and no perks that typical jobs sometimes offer. So what else is there to focus on, right?

Focus on the gift you were given. What giftThere’s a gift involved? As a matter of fact, there is. You, have been given the privilege to care for someone you love very much. Someone who has been a huge influence in your life. Someone who has made a difference in your life in the past, or maybe the present. Someone you love so much you wouldn’t dare think of anyone besides you to take care of them. And you know what? You do an amazing job as a caregiver. Yes, go right ahead and pat yourself on the back. You deserve some recognition for all that you have done and are doing right at this very time.

I find it somewhat fitting to quote part of a song by Donna Summers from 1983:

“_____years have come and gone

And she’s seen a lot of tears of the ones who come in.

They really seem to need her there.

It’s a sacrifcie working day to day.

For little money just tips for pay.

But it’s worth it all just to hear them say that they care.”

I left the number of years blank on purpose. The song says 28 years. For me, I can insert 19 years. You can insert your own time to make it fit for you. I also left in the part about the money because some of you might be getting paid even if it’s a small amount.

The point is, everyone works hard at being a caregiver day in and day out. It’s truly a sacrifice, but you are needed! We love and care about those in our charge and we would go to the end of the earth to do what is best for them. So why not do the same for yourself?

Try to focus a little more on yourself so you can be all you need to be as a Caregiver.

Caregiver/Advocate

Taking on the role of caregiving requires wearing many different hats.

First, and foremost, you want to make sure your loved one is safe at all times whether its in their home or your home, a memory care facility or a skilled nursing facility. We want the best for our loved ones.

Second, we want to be able to have complete trust in any outside help such as sitters, home healthcare staff, certified nursing assistants, nurses and, yes, even doctors.

If your loved one is in hospice care whether it’s palliative or hospice there is usually an appointed person as their advocate. If they are solely in your care, you become their advocate. . .for everything.

I learned about being an advocate early-on with my Mother. From the time of becoming her Durable Power of Attorney to the time of hiring sitters 24/7.

Throughout the process of my caregiving I was constantly advocating for what was best and right for my Mother. I’ll admit, it’s not an easy task caregiving or advocating. Having to do both simultaneously can be draining and daunting. All I can recommend is to do your homework and talk to those in the healthcare field. Don’t hesitate to ask questions (nothing is too insignificant) of everyone, including the doctor in charge. Just because someone has the title of “doctor” or “nurse” doesn’t mean you can’t ask questions. This is your loved one you’re caring and advocating for. And PLEASE do not ever think your questions are stupid. There ARE NO stupid questions.

I understand that some people are not of the nature to buck the system so they do whatever they’re told. However, there are exceptions where a suggestion might not be in the best interest of your loved one. After all, who knows them as well as you do? So speak up and give your views and opinions.

A good example I have to share is a time when my mother’s agitation was escalating and her doctor kept adding medications to her regime all the while trying to impress upon me how “just a small dose” would take the edge off. I was trusting this doctor because, well, she was the doctor!  I was adamant I didn’t want her over-medicated and the doctor assured me that would not happen. But, in fact, it did happen. She had to be admitted to a psyche ward to ween her off all medications and start fresh with what she really needed without having numerous drugs to settle her down. I can’t tell you the guilt I felt because I was her advocate, how did I let this happen?

There it is, that word guilt! No escaping that little culprit of a word when you’re a caregiver/advocate.

I trusted the doctor, but what I didn’t do was put my foot down and say “no more”. Even the psychriatrist was astounded by the number of drugs she was on just for agitation. After one week in the psyche ward, my mother was more alert and smiling and being herself. The medications changed her personality and made her more irritable rather than calm.

What I’m saying to all Caregivers/Advocates is be on your toes at all times. Ask “why” something is recommended or prescribed. Read up on side effects especially if a person has any kind of dementia. Some medications for agitation are not recommended for dementia patients and can cause serious problems, even death.

The other point I want to make here is never let a healthcare professional dismiss your concerns about your loved one because of “old age”. I can’t tell you how many times I heard that from various healthcare professionals. We’re all going to age, but that doesn’t mean to write off the elderly because they consider the health problem to being age related. There are many avenues to take in helping our aging population whether they have dementia or some other health problems. Step up and have the courage it takes to be the caregiver/advocate your loved one is counting on.