November 7-13 is National Caregivers Month.
This is a time for all caregivers to explore the treasury of books available through www.AlzAuthors.com.
This organization of creative writers has some of the best information available through their own journeys. Some of the books are fictional yet very compassionate and on-point regarding caregiving. There is something for everyone.
As the holidays approach caregiving can become much more anxiety driven due to all the hustling and bustling associated with holidays. Take some time for yourself and read some of these heartwarming and loving stories. It will help you, the reader, understand you’re not in this alone and will provide some much needed peace along the way.
“Mom, why does grandpa act so weird? Why doesn’t he know who I am? We used to play games together and now he won’t even talk to me.”
If you have young children, tweens or teens, you may have been asked this question. How did you respond? Did you ever think about being asked this question and how you would handle it?
As Caregivers to our parents, we owe an explanation to our children no matter what their age. It’s hard enough to understand ourselves what’s going on and why this is happening; imagine a young person trying to make sense of this!
Being honest and open with kids of all ages is first and foremost. Never try to skirt around the subject. Never tell them you don’t have time to talk about it. When is the right time? Kids don’t want to be brushed off, especially when it comes to someone they love. You don’t like it if a doctor brushes off your questions, right? So be upfront and honest with your kids.
You have ways of communicating to children and young people about what’s going on with their grandparent(s).
One way is with books you can read together on the subject of dementia. AlzAuthors is a great resource for these books. Reading about brain changes with children can help you get the message across in a way you’re not able to express, or feel unsure how to communicate in the right way.
It doesn’t matter how young or how old your kids are, when it comes to wanting to know why their grandparents are not the “same” you must be ready to explain. It’s never easy to sit down with the family and talk about what’s happening with your loved ones, but it is something that has to be dealt with.
If you feel you might upset the kids by talking about what’s going on, just think how much more upset they will be if you don’t tell them. They are part of your family and there should be no shame or secrets when it comes to explaining brain changes. Kids are much more resilient than you may give credit.
Once your children understand what’s happening to their grandparent(s) you will be pleasantly surprised at the level of love and care they want to share with them. Kids have a way of dealing with issues that we adults seemed to have a hard time with. Because children are much more uninhibited about such things, they’re a natural for showing and giving compassion. The grandparent(s) will gravitate toward that compassion in ways you cannot imagine.
Never underestimate a young person’s capacity to understand what’s happening to the people they love.
Being open and honest with your kids allows them to see you are able to be transparent with them and in return, they can be the same way with you. It’s all about them trusting you knowing how much you love and care about their feelings as well.
If you’ve been procrastinating having this conversation, NOW is the time to sit down and tell them what’s going on.
Recite this verse to yourself:
“In quietness and trust is my strength.” Isaiah 30:15
Most people who have been caregiving for quite some time already know the in’s and out’s when it comes to caregiving.
What about the people who are new to the role of being a caregiver? There is definitely a list of unchartered waters to travel.
A person new to caregiving usually has high anxiety just thinking about becoming a caregiver. Add in all the things that need to be done to help your loved one, on top of realizing, “I am the Caregiver now”, and the internal monitor begins beeping at a rapid pace!
Is this crazy or unusual? Not at all. Any time a person steps into the role of caregiving, there is going to be some level of anxiety. We. Are. Human.
However, becoming a caregiver doesn’t necessarily mean you have to go this road alone. Contact family members to help sort out the details and help with a plan of action. If you don’t have any family members, then contact your closest friends, the ones who offered their help should it be needed. If you don’t have close friends, there are numerous resources available to all caregivers. Don’t be afraid of asking for help. Sometimes it takes a village when you become a caregiver. Asking for help doesn’t mean you’re weak and incapable of being a caregiver. Asking actually says you’re up for the task, but could use some input and/or help with various items.
I used to think becoming a parent was the hardest job in the world. After all, babies don’t come with an instruction sheet. It’s the same with becoming a caregiver. There’s no particular instruction sheet, but there are plenty of people who’ve been through the journey and are very willing to help. You can choose professional help or you can start with someone you know that’s been in a caregiving role. It doesn’t matter which you choose. . .just choose! Don’t let your pride get in the way of asking for help either. You have to set that aside and know this is a journey. There is no room for pride. Besides, pride has nothing to do with caregiving in this journey.
The fact that you’ve stepped up and offered to be the Caregiver is monumental. In fact, you may not recognize this in the beginning of your journey, but I am here to tell you there are many rewards being a Caregiver. I know, because I had to venture out into this unknown territory myself and I have no regrets whatsoever.
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!
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!
Mother’s Day ~ That has a nice ring to it, don’t you think or do you?
As we approach Mother’s Day, those of you who are caregivers to mothers with Alzheimer’s or other dementias, may feel it’s not a happy day. “What’s to celebrate? My Mother doesn’t even recognize me.” “Why visit? All my mom does is say mean things to me!”
Yes, that might be the case. As hard as it can and might be to face those challenges, it is worth the time to spend with your Mom. She may not know you, but you can sit and hold hands, talk about anything and everything. Share stories about the kids or grandchildren. Bring her artwork the grandchildren have made and place it on a bulletin board in her room. It doesn’t need to be difficult just keep it simple.
If your Mom is saying mean things to you, redirect the situation by showing a family album to her and start reminiscing. Whatever you do, don’t become frustrated and go off in a huff! That only confirms what she’s thinking about you.
As hard as it is to be loving when you have darts being thrown at your heart, you will have to muster through it. Yes, you’re feeling hurt and maybe getting a little emotional and feel the need to leave. Instead, try this: “Mom, I forgot something in the car. I’ll be right back.” Walk out of the area where she is (it doesn’t actually have to be going to the car) and go into another room. This gives you a “moment” to collect yourself and your emotions. As soon as you feel calm enough, go back and start your visit all over. If she’s still being unkind when you go back in, you can just tell her it doesn’t seem like it’s a good time for her to have visitors and you’ll come back a little later. I know how difficult this can be because I experienced this myself.
If there are grandchildren in the picture, make sure and take them with you to see their grandmother. I guarantee, even if your Mother doesn’t recognize them, she will be delighted just to be around children. The visit doesn’t have to be an hour. More than likely your Mother won’t have any concept of time so even if you’re there 30 minutes she will enjoy the company. I’ve said it before and I’ll say it again. . .kids and pets make dementia patients very happy!
“I will look after you and I will look after anybody you say needs to be looked after, any way you say. I am here. I brought my whole self to you. I am your mother.”
―Maya Angelou, Mom & Me & Mom
Your Mother is always going to be YOUR MOTHER! Somewhere deep inside of her she still knows you. She is a person who deserves total respect and most of all she deserves pure unconditional LOVE. Don’t let your “feelings” get in the way. This is not about you, it’s about your Mother and who she is now.
“But behind all your stories is always your mother’s story, because hers is where yours begins.” Mitch Albom, For One More Day
HAPPY MOTHER’S DAY!
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.
Today I was introduced by AlzAuthors featuring my book, To Helen With Love. I am honored to be included with so many wonderful authors from all over the country. You can read all about it here.
I encourage you to go to AlzAuthors.com and peruse the many resources they offer. This is one of the most helpful sites I’ve ever come across.
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.
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!