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!

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Patience and Love

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Have you ever felt like you have the patience of a saint? Now that you’re dealing with a loved one with dementia you discover your patience seems to run thin too much of the time. You thought you were a patient person, what happened?

There were plenty of times in the beginning stages of my Mom’s dementia that made me want to pull my hair out. I didn’t know enough about dementia or Alzheimer’s to know what was happening wasn’t her fault. Still, I thought if I was patient enough she would cooperate. That wasn’t the case.

Having patience with someone who has dementia is nothing like being patient with your spouse, kids, friends or co-workers. The reason it’s different is simple. A person with dementia has no reasoning skills or the ability to understand what they are doing. You might have to tell them the same thing ten times and they still don’t understand. Now you’re losing your patience. It’s annoying to have to repeat something over and over and they still don’t get it. Right?

Look at it this way. Remember a time in school when you had a difficult time understanding a certain subject and the teacher had to explain it over and over? You still may not have understood after all the explanations. The teacher didn’t scream at you because you didn’t understand. Instead, he/she probably tried another approach to helping you understand. That’s what caregivers have to do.

The person with dementia is never going to understand so it’s up to you to find another approach to help them. It means you may have to take them by the hand and lead the way because they didn’t understand you wanted them to walk down the hall or walk into the bathroom. The simplest tasks are just as complicated as the difficult tasks; there’s no difference to them.

Depending on the situation, you might have to get firm with them only you do it in a loving way, not in anger. Never ever use anger when you’re caring for a person with dementia. If you feel your anger starting to build walk away and compose your thoughts and emotions. Saying hateful and degrading things to that person is more detrimental than you realize. There is always a part of them that knows something is not right with how they are being treated. They may not be able to tell you that, instead they might retaliate by hitting, shouting and crying because your anger has agitated them and probably scared them.

Don’t think because they say and do abusive things to you that it’s okay for you to treat them the same way. They don’t know any better. You do!

There’s nothing worse than a caregiver who abuses a person with dementia whether its verbal or otherwise. If you know of this happening to anyone at home or in any kind of a facility, you must report it. If you’re not able to control your own temper and emotions while caring for this person, then you need to find someone to help you out. You can also attend a support group or find one-on-one help to teach you how to take care of a person with dementia. There are many resources to help with that specific problem.

When I felt frustrated dealing with my Mother I had to either walk away and regroup or I had to leave all together. There is never a win-win situation if you get into a confrontation with someone with dementia. I found, in some cases after composing myself and getting my emotions in check, my mother usually didn’t recall there was ever a problem.

Caregiving is not just about being patient. It’s about learning different ways to communicate. It’s learning new and different skills to help a person cope with their dementia. It’s about LOVE.

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. It always protects, always trusts, always hopes, always perseveres.” 1 Corinthians 13:4-5, 7

 

 

Do You Hear What I Say?

The title above is the title in a newsletter from Teepa Snow, dementia specialist. I’ve mentioned Teepa in earlier posts. She is beyond amazing in the work she does with families and health care providers dealing with people with dementia on a daily basis.

When I read her January 2016 newsletter I felt compelled to share it in this post. I guarantee you will learn so much just through this one article. Just click on teepasnow.com for the entire article.