Dealing With Loss

Caregiving has many tags attached to the role and as you begin the journey, or you’re at the end of the journey, you feel loss. Loss is one of those tags.

In the beginning of my own caregiving years I didn’t understand why I felt lonely and so afraid. I was seeking out the best information and doctors to the best of my ability. I was trying to educate myself on this whole idea of what dementia even meant and how it was going to affect my loved one’s life. Little did I know how it was affecting my own life.

When we think of “loss” we usually think about the finality of life, in other words, dying. But that isn’t always the case.

I learned early on that my loss was associated to losing my mother to a dreadful disease that took her brain away piece by piece in a long and slow process. Trying to understand and deal with the changes associated with dementia/Alzheimer’s was the beginning of “loss” for me.

The more I sought out help to understand what was going on with my mother, the more I began to see how this disease was making me grieve; grieving the loss of who my mother had been and what she was becoming as her dementia advanced.

Loss and grieving began the moment I heard mother’s diagnosis. Loss is grieving. Grieving is ok.

Caregiving is exhausting. Taking time to feel the loss and let yourself grieve is healthy. Sound crazy? Not really.

There’s no way to explain your personal feelings and why should you have to? No explanation is necessary. You are the one who is on this journey and you have to find what works for you in dealing with the rollercoaster of emotions associated with caring for someone with dementia or Alzheimer’s. Prayer was my go-to. It may have been slower than I wanted, but it never failed me.

Take time out of the busyness of your schedule to reflect and find what helps you to cope with the loss, and give yourself permission to grieve. This is not being weak. This takes strength. That strength is buried deep within you.

 

 

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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!

Fa-La-La-La

‘Tis the season to be jolly. . .or not.

Most Caregivers would probably think about the holiday season as being more stressful than “jolly”.

This is the busiest time of the year. Hustle and bustle everywhere. Crowds of people in stores. More traffic. More stress. Less patience!

If you are new to caregiving you’re probably wondering how you are going to pull off handling the holidays with your family and taking care of your loved one at the same time.

Start now by enlisting help from local family members. They can help with meal preparations. Ask some of your closest friends to run errands for you. More than likely, they have errands to run too, and helping you out won’t be an inconvenience. Ask your children to help with household chores, taking care of pets and anything else you need to have done around the house. Kids, no matter their age, like to be included and feel helpful when times are stressful for the parents. Showing your kids you trust them to be responsible helps to instill a sense of self-confidence. They appreciate you and you appreciate them. It’s a win-win.

Don’t try to be the superhero by attempting to do everything by yourself. That serves no purpose except to make you more stressed out. How will you ever enjoy your time with the family in that frame of mind?

If your loved one lives with you, make sure to keep the family gathering down to a minimum if possible. Loud voices, chaos and people talking over one another is agitating to a person with dementia (if they are advanced dementia).

Holiday music is a favorite of most people, however, playing it loud can be upsetting to your loved one. Try a selection of more classic soft carols playing in the background. Everyone will still enjoy the music.

Be considerate of your loved one if they are joining you at your home, or if they live there, by paying attention if they are getting tired and need to lie down. Just because they are with everyone at the family gathering doesn’t mean they can adjust to your way of entertaining. People with dementia tire easily and can become agitated if they start to feel this way. The family might be trying their best to interact with your loved one so they don’t feel left out, but remind them that they need to speak slowly and in a calm voice so your loved one will be able to understand them and try to process what is being said to them. And please! Remember to show respect to your loved one while at the family party by not talking about their situation with other people in front of them. They still have ears, and even though you might think they don’t understand, they do know you’re talking about them. They are still a member of your family and should be respected.

If your loved one lives in a nursing home or assisted living, set apart a special time to be with them even if it’s only for an hour. There’s no rule specifying you have to stay all day. Just make the time to be with them, that’s what’s meaningful. If you can take the kids, grandchildren or even the family dog, that will brighten their day more than any present you could buy them. Take advantage of the moment by taking photos of everyone together. Make a special memory of that time together.

Caregivers, you are never alone. Lean on the One who can always help you.

An infinite God can give all of Himself to each of His children. He does not distribute Himself that each may have a part, but to each one He gives all of Himself as fully as if there were no others. A.W. Tozer

MERRY CHRISTMAS!

 

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

 

Caregiving Independence vs. Interdependence

After an amazing sermon at my church this past Sunday on independence and interdependence it dawned on me that this information really applies to a Caregiver.

Independence is when you think you don’t need anyone; you can do this alone. Interdependence is knowing you cannot do this alone. Recognize it’s better for you as the caregiver to shake off the pride and let others help you in whatever way they can.

Independence can cause arguments because you won’t give up the idea you actually do need all the help you can get. When family or friends offer and you keep turning them down they might get a little angry at the fact you won’t let them be one of your caregiving rescuers.

Why do caregivers do that? I did it in my early years of caregiving. It wasn’t that I thought I was Superwoman, but I didn’t feel right asking other people to step into my world and experience the turmoil I was going through. Dumb! Really dumb!!

What is your family for if not to help you in times of need? What are your real friends for if not to step in and give you some respite time?

There are no “heroes ” in any of this.

There has to be interdependence to make it through the days, weeks, months and years as a caregiver. Interdependence is having faith that these people offering their help will indeed be your angels, your saving grace.

Why would a caregiver turn down another set of hands to help with the every day chores that are piling up because you’re running your loved one to doctor’s appointments?

Why in the world would you turn down the opportunity to actually have some quiet time to yourself?

When was the last time you were able to take a nice long walk and not worry about your loved one? And when was the last time you were able to take a nice long bath or shower without any interruptions?

Start to re-evaluate your situation. If you have family and friends who offer to help out, start saying “yes” to them. If you don’t have family or friends that are able to be of help, then talk to someone in the healthcare field, they can direct you to the right sources.

Let interdependence be part of your “new” thinking. You won’t regret it.

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To Helen With Love

I am happy to announce that my memoir, To Helen With Love, is finally published!

After five years in the making, this has been one of the most intense endeavors I’ve ever taken on, but well worth it.

While I was writing this memoir I discovered how much pain I still had deep inside of me. Pain from some of the experiences. Pain from not knowing what or how to deal with dementia. Pain of not understanding what caregiving entails. Pain from dealing with the healthcare field. Finally, pain when it’s all over.

Many times through my caregiving years I felt lonely inside. Even after my Mother’s death I felt loneliness. You know what I mean if you are a Caregiver or have been one. Even though I was surrounded by family and people I loved, there was still a sense of loneliness.

Pouring through my journals to capture information for my memoir was like going back in time and reliving the experiences. Some of my entries were humorous and other entries were screaming “help, I don’t understand”.  Still others were filled with sadness and torment. I even found myself in tears while typing the manuscript! I began to realize I wasn’t “done” with my grieving, not even close. That’s when I discovered I had not had any closure after the death of my Mother.

Writing this memoir may have taken me through all those emotions from beginning to end again, but it also gave me closure. I had no idea how much I needed that.

Personally, I don’t believe we ever truly “get over” the death of someone we love, we just learn to accept it; we never really forget. My loved ones are still close to my heart.

My intention for writing this memoir is to help other caregivers know they are not alone in their journey. To let them know it’s an ongoing learning experience all the way to the end. There’s no magic wand to free up the pain and sacrificing a caregiver deals with.

In my personal experience, my faith was my saving grace throughout my caregiving years. The Lord carried me through some rough turbulent seas, without Him I would have drowned.

A scripture that came to me during the writing of my memoir, and is included inside the book is:

“Weeping may remain for a night, but rejoicing comes in the morning.”Psalm 30:5

I do hope, if you decide to read my memoir, you will find comfort and hope.

Where to find To Helen With Love:

http://www.xulonpress.com/bookstore/bookdetail.php?PB_ISBN=9781498492812&HC_ISBN=, Amazon and Barnes and Noble