Is It Time To Be Tested?

Is it time? I wonder how  many people are asking themselves if their loved one needs to be tested for memory cognition? It’s not an easy decision.

If you’re married to the person who has memory problems it might be like walking on eggshells. After all, you don’t want to assume anything and you certainly don’t want that person to take offense at the suggestion. So what do you do?

One way might be to seek out professional counsel. This is actually a smart choice since it not only helps broach the subject with your loved one, it also helps you to understand some of the ins and outs regarding memory loss. This isn’t a skill we learned in school (unless of course, you went to school specifically for this field) so finding someone who is an expert in memory care seems like the common sense route to take.

In the case of the person being a parent, that too, can be a little tricky. While you mean well, your parent might take offense to the fact that you would even entertain they have memory problems. It’s just a part of aging, right? Well, maybe. But if the short term memory has gotten them lost while driving, leaving the house with the stove on, or forgetting to take medications, it just might be time for that testing.

Again, its all about how to approach the subject, your tone of voice and showing your concern in a loving way. No one wants to be “told” they have a memory problem. No one will like you being bossy and taking the dictator approach.

Patience. Empathy. Tact. Love. These are important attributes when talking to someone who might have memory impairment.

Take time to think about how you might feel if someone was talking to you about having memory problems. How would you react? Would you be offended?  Would you be hurt? Would you be defensive? Maybe you would be grateful because someone else cares enough to want to help you find out what’s causing the problem.

Just because someone has memory problems doesn’t mean they have Alzheimer’s disease. There’s so much more to this. That’s why cognitive testing is so important.

If the person you’re concerned about has a history of head injuries this can be associated with memory loss. We’ve seen in the news about athletes who have had repetitive concussions and how it has affected them later on in life.

When you or your loved one notices memory problems beginning, it’s better to check it out sooner than later. Be their partner in this quest, not their enemy.

Dementia is the umbrella for these memory diseases:

  • Alzheimer’s
  • Vascular
  • Lewy Bodies
  • Frontal Temporal
  • Huntington Disease
  • Creutzfeldt-Jakob Disease
  • Parkinson’s

Take a moment and go to the Alzheimer’s Association and read about all the different kinds of dementia and educate yourself.

The more you know the less difficult it will be to talk to your loved one about memory problems.

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.

 

Uniquely You

I’ve been a little off my game lately and not doing the writing I should have. Then, a lovely lady I know, reminded me the other day why I’m writing this blog: To help Caregivers. Her words were encouraging to me. Imagine that! I’m supposed to be encouraging others, and little did I realize, I was in need of some encouragement as well. Funny how life is, huh? We all need a little nudge now and then.

I have been working with my copy editor on my book (my memoir as a Caregiver) and one of the chapters I was reviewing brought up a time my mother was going through a transition in her dementia. The “not so very nice” side of her disease was beginning to come out. For those of you who are caregivers to someone with dementia, you know what I’m talking about.

You try your best to do what is right and pleasing for your loved one, only they don’t comprehend that and they lash out—at you. When that first happened to me I didn’t know how to act or respond. My feelings were so hurt. I wondered why my own mother would be doing this to me? I was only trying to help her.

I learned the hard way that what I thought was helping or pleasing my mother was not necessarily how she perceived it. I had to find another approach that worked for both of us. Everyone has to find what works best between you and who you’re caring for because all personalities are not created equal.

One time my mother accused me of “trying to put her away” because her doctor recommended a skilled nursing facility. Fortunately for her, and me, it turned out she did not need that level of care at that particular time.

It wasn’t the last time my mother would lash out at me; there were numerous other times. Don’t be surprised if your loved one accuses you of something that never happened. It might be as simple as them saying you never told them something (and you just did) to accusing you of throwing away something they felt was of value to them. Whatever happens between you and them, do not get into a confrontation by trying to defend yourself because you won’t win. Just empathize and say you’re sorry.

Many times throughout the years of my cargiving I felt like my heart was the target when hurtful things were said; like an arrow piercing through it. After many years, I thought I knew how to handle such outbursts. I became a little over confident and my vulneralbility must have shown through because I was caught off guard by hurtful words once again.

Don’t become discouraged if you have experienced any of the above. It’s easy to feel down and defeated. The energy level you need isn’t worth giving up on finding the right approach to dealing with such situations. My solution was always prayer; it never failed me.

Just today I read an excerpt from Visual Theology by Tim Challies and Josh Byers that explained we all have a vocation in life. Some people have several vocations: moms/teacher, dads/accountant, teachers/mentor, pastors/husband, garbage collectors/volunteer, doctors/little league coach, caregivers/mom/daughter/son/husband/wife and more.

 

Only let each person lead the life that the Lord has assigned to him, and to which God has called him. — 1 Corinthians 7:17
This instruction implies that God has made each of us uniquely and assigned to us unique lives with unique roles. Our responsibility before God is to understand the gifts, the skills, and the passions He has given us and to use those in fitting ways — in ways that do good to others and, in turn, bring glory to God.   Excerpted from Visual Theology.

What a beautiful and eloquent way of stating that you and I were uniquely assigned the role as caregiver for our loved one! I don’t know about you, but for me that is the highest compliment a human being can be given. Once you realize this unique gift you’ve been given, you are better able to meet the challenges along your journey as a caregiver. I’m not saying it will be easy, but it is comforting to know who has your back!

 

 

 

Calling All Caregivers!

holding-1176548_640

How do I describe the roll of a Caregiver?

  • Daunting
  • Exhausting
  • Tiresome
  • Lonely
  • Fearful
  • Uncertain
  • Questionable
  • Worrisome

These adjectives all come across as negatives, yet they are real concerns for the Caregiver.

Are there any positives as a Caregiver?

  • Love
  • Faith
  • Advocate
  • Helper
  • Teacher
  • Confidante
  • Playmate
  • Purpose
  • Knowledge
  • Humorous
  • Inspiring
  • Caring
  • Blessed

While you may have more ideas of what describes a Caregiver’s roll, for me, the positives out weigh the negatives. Of course, there were many times I didn’t feel like there were any positives as a caregiver. However, looking back and assessing all those years of caregiving, I can clearly see so many positive times.

Isn’t it common when you’re in the midst of the storm all you see are the black clouds and terrential downpours? Eventually the sun does come out and when it does there’s a fresh new sense; the air is clearer, we can take a deep breath without feeling suffocated.

What is it you do to clear the fog and begin a fresh new day? Here are some things that worked for me:

  • Prayer/meditation
  • Journaling
  • Talking to other caregivers
  • Taking a walk or hike
  • Listening to music I love
  • Reading a fiction novel
  • Dancing
  • Spending time with a close friend(s)

The above activities are what helped get me through as a caregiver and here’s why it did:

  • Prayer was monumental for me and helped me through every single situation (really!).
  • Journaling was the most therapeutic exercise ever. I highly recommend trying this.
  • Talking to others who were in the same position as I was proved extremely helpful in so many ways.
  • Walking/hiking in the woods or along a quiet road always gave me a sense of calm. Nature has a way of reaching deep into the soul to calm us.
  • Listening to music of different genres that I love helped me think of different times in my life before becoming a caregiver.
  • Reading a fictional novel let me escape for a little while from “real” life; no thinking needed.
  • Dancing was, and still is, a form of expression releasing endorphins to stimulate and help me feel good and stay healthy.
  • Friends, close friends, are always there for you, no questions asked, no judging, just good listeners.

In past posts I’ve tried to express the importance of taking care of YOU, the Caregiver, in order to function every day, month or year. Whatever your idea is of finding a release to keep you moving and functioning, make sure you follow through with it. There’s no guilt or shame in taking care of yourself. You will become a stronger Caregiver for it.

A favorite scripture of mine in Isaiah was reassuring. I hope to encourage you with this verse as well.

Humor Me

enjoy-the-little-things-906291_640

When I was thinking about this title it occurred to me it might be misleading in some way. However, I’ll give it a try!

Humor:  A funny or amusing quality

Merriam-Webster Dictionary

Why would I want to talk about humor? Because it’s a way to lighten up the day.

Maybe while visiting a loved one with dementia  you encountered a rough spot with him/her. Maybe your loved one has had a challenging morning/day and they don’t necessarily want to be sociable. What do you do? Some of you might become frustrated and a little angered, others might decide to leave and come back another time or day.

What I found to work for me dealing with my mother was using humor with her. Even if she wasn’t as sociable as I would have liked her to be I still tried the humor approach before I did anything else. Most of the time it worked. It wasn’t always easy to come up with something to make her smile much less make her laugh. Once I got her smiling I knew  I “had” her and kept it going. It’s sort of like trying to be a standup comedian; you just keep rolling with the dialog and feed off the response you get from your audience.

Using humor with my mother not only lightened up a stressful moment but it helped me as well. Seeing her become happy and laughing certainly helped my frame of mind too.

You might wonder what do I talk about that is going to be humorous? Well, just about anything really. For me, I talked about my daughters and their children. Mother enjoyed hearing about the kids and the great grandchildren; that always brought a smile to her face. I would tell her stories my girls related to me about their kids and then I would pass it along to her with a whole lot of embellishment and animation. Using a lot of expression while telling the stories gave her a mirror image and before I knew it she was being expressive in her responses.

The little time it took to tell a fun story was worth the amount of time I had with her smiling and being in a good frame of mind. So talk about your pets and the funny things they do, or talk about something funny you heard from a friend or saw on t.v. It really doesn’t matter just as long as you try and do it.

“From there to here, from here to there, funny things are everywhere.”  Dr. Seuss

The old saying, “laughter is the best medicine” still rings true even if you’re using it with a person with memory problems. Everyone enjoys laughing; laughing releases endorphins which is good for everyone!

The next time you visit a loved one with dementia try out the humor approach and see what happens. I’m pretty sure it will put a smile on you and them!

It’s the little things that really matter.

 

 

 

Dementia and Change

Change

I was thinking about all the different scenarios caregivers experience and how they try to handle them to the best of their ability. It got me thinking more about the person with dementia and what they are experiencing and coping with. While both individuals are going through stressful times I believe the person with dementia is dealing with much more than the caregiver.

Some of you might be thinking, “Are you serious? What could be  more stressful than being a caregiver to someone who has dementia of any kind.” Believe me, I’m certainly not discounting the fact that caregiving is a high stress job. I personally know the stress of being a caregiver. Just stick with me for a moment.

When I was growing up my dad had the kind of job where we had to move every two years. No, he wasn’t in the military. His job was one of helping a company start up and get running for two years then move on to the next place. As a small child it never bothered me to move around so much, not until I hit my teenage years. As teens we’re starting to establish who we are and we begin to identify with some of our peers. We become involved in all sorts of school activities, we are allowed to date and go to parties. Some teens feel like “this is the life!” while other teens might think “it’s the end of the world!” However you felt as a teenager you know you wanted to be able to hang out with your friends and do all the fun things in life. I was exactly like that. Except one day the time came for my dad to be transferred. . .this time I was devastated. Moving meant I had to leave everything and everyone that was familiar to me. How on earth would I ever make friends again and fit in? I was scared, upset and extremely distraught.

Now, think about a time (or maybe the time is approaching) you had no choice but to move your loved one who has dementia. That person has probably lived in their home for most of their life. Now you’re telling them they have to move. Their situation is no different from what mine was as a teenager. They have friends they’ve known their entire life. They have attended the same church since they got married. They have “history” in their town and neighborhood. How can you possibly come in and tell them they have to leave everything that is familiar to them?

Maybe you haven’t reached the point of relocating your loved one. But those of you who have, know it’s wasn’t an easy decision; there was probably some guilt involved in the decision making as well. As caregivers there will always be guilt lurking over your shoulder no matter what you do, it’s part of the role as a Caregiver.

What I’m trying to convey is have some empathy for your loved one when it comes time to make a major change in their life. Be considerate, and by all means continue to be respectful, they deserve it. If you’re not sure how to bring up the subject of moving or changing living arrangements whatever the change might be, talk to other caregivers who have been in the same situation and ask how they handled it. Getting input from other caregivers is more helpful than you might realize. Don’t be embarrassed to ask for help.

If you haven’t noticed, and you will, people with dementia no matter what kind of dementia, do not handle change well. It could be as simple as rearranging a piece of furniture, moving their toothbrush to the other side of the sink and even changing the kind of toothpaste they’re used to seeing. Really? Something so minute as that is hard for them? Yes! They might not be able to read labels anymore, but the packaging doesn’t look the same, so yes, it’s change for them. My mother thought her lipstick was her toothpaste one time simply because it was sitting where her toothpaste was usually located. Someone had put the toothpaste in the cabinet above the sink. What did she know?

Think about ways you can help your loved one when there has to be changes. Never try and convince them you know best and they don’t, because it doesn’t compute in their mind the same way as it does in yours. Again, ask for help if  you don’t know how to handle the situation. I just cannot say that enough.

Change is a constant in our everyday lives but not for a person with dementia. They need consistency all of the time. Be mindful of that and help them to stay as calm and focused as you possibly can. Any time there is change it can possibly trigger agitation, anger and certainly confusion. That’s where you will need an abundance of patience.

Everything we take for granted and understand to move forward due to change is completely opposite for the person with dementia. Start putting yourself in their place and rethink how you can make things more simple and inviting when change is the inevitable. It might take some time for them to acclimate to the changes but eventually they will.

Remember to:

  • Love on them daily
  • Be present when you are with them
  • Put your electronic devices away
  • Focus all of your attention on them

Give thanks for having the most important job in the world!