Sundowning

I don’t know about you, but the time change of going back one hour takes me about a week to get use to. Who made the decision to “spring” forward and “fall” back any w…

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Sundowning

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I don’t know about you, but the time change of going back one hour takes me about a week to get use to. Who made the decision to “spring” forward and “fall” back any way?

If you think it might be hard on us, think about those individuals with Alzheimer’s and other dementias.

As the sun begins to set and darkness creeps in, a person with dementia has a very hard time adapting. This is what is referred to as “sundowning”.

Doctors and scientists aren’t exactly sure why this happens to people with Alzheimer’s and dementia, but they do have some theories. They think the changes in the brain of someone with dementia or Alzheimer’s may affect their inner body clock. This is an area of the brain that controls when you sleep and when you’re awake; this begins to breakdown as the dementia or Alzheimer’s progresses.

Here are some common behaviors with sundowning:

  • Agitation
  • Disoriented
  • Irritation
  • Suspicious
  • Confusion
  • Demanding

The person might begin to yell, pace or even hallucinate. All of this is part of sundowning.

Be aware of all the different things that can cause your loved one to experience sundowning. As the light begins to fade there are more shadows which can create fear and confusion. They have a hard time knowing what’s a dream and what’s reality. Reassure, never argue or try to reason…it won’t work. Use a calm voice and keep the noise level down. Soft music is a great tool to soothe someone.

If you’ve been with your loved one all day and you begin tiring or become irritable, your loved one will pick up on your emotions and before you know it, they are mirroring you! Yes, caregivers are likely to become annoyed at the end of the day because they are worn out and need some rest. That’s the time to “call it a day”. If you live with your loved one, have someone else relieve you so you can get some sleep/rest. If your loved one lives in a facility, it’s time for you to go home for the night.

Just remember, sundowning is not uncommon for people with Alzheimer’s and dementia. Don’t feel like your loved one is the only one who experiences this, they aren’t.

If you still have questions and concerns about sundowning there is a plethora of information on the web that can help. The Alzheimer’s Association is, of course, another great resource.

I say this all of the time: Never hesitate to ask questions or for help. There are so many people ready and willing to support you through your journey. God Bless!

 

Strength & Gentleness

Today while perusing Pinterest (yes, I’m a fan!) I came across this quote. Reading it I thought what a great affirmation for Caregivers.

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As caregivers it’s equally important to be strong and gentle at the same time. After all, strength is one of the many characteristics it takes to be in the role of a caregiver.

However, it’s more than just being “strong” in your role. It’s how you apply that strength in order to connect with the person you’re caring for. That’s where the “gentleness” comes in.

You might be thinking that your strength is all that gets you through each day. That may be true. But stop and put yourself in your loved ones shoes. How much strength has it taken for them to get through an hour of a day or even ten minutes trying to get dressed?

When a caregiver shows strength and gentleness at the same time, they can usually get their loved one to cooperate a little easier. Using your strength with a calming voice (gentleness) goes a long way not only for you but your loved one as well.

It takes a lot of energy to be a caregiver, I know, I used to be that person. I can honestly say it took all my strength every single day, but I also found that I couldn’t just be “strong”, I had to be as gentle as possible in order to deal with the task at hand. I’m not saying it’s easy to combine the two, but once you do you’ll see a change take place with your loved one.

Maybe you are the personality type that thinks because you lack patience you can’t be gentle. Honestly, even if  you’re not the patient type you can still be gentle. The old saying, “It’s not what you say, it’s how you say it”, has never been more true for a caregiver. Try and remember that the next time you become frustrated with your loved one.

If you struggle with strength and gentleness, let the above quote be your new affirmation. For those of you who already combine the two, be grateful!

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.

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.