Alzheimer’s Secret – Highs and Lows

How to help Dementia and Alzheimer’s energy stay moderate not high or low…by francy Dickinson

Ups and downs of Dementia Alzheimers

George up and happy with Mimi’s visit

We just had a great surprise…a long time Twitter friend came to visit! George was up and happy and involved with meeting her and talking to her…but today – he is in bed. Does that sound familiar?

I really wanted to share the Up’s n Down’s syndrome because so many of us have experienced it and it leaves us (as care givers) feeling like we see another person from others.

When George has his family come to visit, he perks up and gives them his attention,  love and laughter. They walk out the door and he takes a crash dive and I have to pick up the pieces. It has happened so many times that I have learned a few tips and I thought I would share them.

You are not going to be able to help others understand that the person they chat with…is the best they can be. The senior is on a high in energy and is performing for them. The visitor sees that person and believes that is how they are on a full time basis. I have often gotten a little lecture about my comments on George’s condition; that they must be exagerated. That is always so hurtful to me.

I want George to be well, to be happy and live a wonderful retirement. I want him to spend time out and about and enjoying his life with his friends and family. But no matter how much I want that for him, it will not happen. George, has Alzheimer’s that means that he has up’s and down’s and I am the one that has to try to keep him within boundaries so his life is as rich as it can be on a daily basis.

As a lay-person, it has been explained to me that each of us lose bits of our working brain each day. If we are healthy those bits are replaced by the body. When a senior has Dementia the replacement of those bits becomes labored and then slows down like molasses. So, if George gets excited and uses up his energy and brain bits on a single event…it takes time for him to recover. He has to restore his body and brain energy and working parts. As the Alzheimer’s moves forward that replacement gets slower and slower and one day, will simply not happen.

That means I have a job…to decide what is worth George having a high and then a few days low. Some times I simply have to say NO, to an event in order to keep him on an even keel.

Here are some ideas to think about when you are making those decisions….should I take George to an event, or have so and so over to visit? Or, should I say NO, and be the bad guy. Thus, giving George a reprieve from a heavy low…that would take days to recover.

TIPS TO HELP YOU MAKE SOLID CARE DECISIONS:

  1. Make sure you remove your own feelings in this decision. This is a hard one; as the spouse of a senior with dementia…my life is involved in each decision too. So I try hard to step back and make my care decisions for the best of George…not the ‘best of francy’.
  2. Has George been having a solid and calm month? Not, the last few days…but the month. Alzheimer’s has a flow and monthly is the smallest amount of time I use. Maybe he has had a month of falls, or bladder accidents and emotional upsets that have been higher than normal. If that is so, then extra visits, events, or celebrations are put on a low burner.
  3. Plan ahead. I have a 4th of July celebration coming up. It is extra important this year because we have lost one family member and gained another. Many of my family is going to be at this celebration and I want George to go. So I am already planning ahead. I am going to make sure he is exercised each day of June.  That he does not miss any of his meds, and has plenty of sleep. I have decided on the day of the celebration I will take things to make sure he can have a mid-afternoon nap and will eat well, with extra sugar to give him energy.  I am planning that far ahead…so he will go through the day with the least amount of stress as possible. If he gets extra tired…I will be ready to leave the event and go home.
  4. Visiting at our home or going out? I find that George is getting more and more attached to the ‘safety’ of his own home. It is easier for us to have a visitor here…one or two at a time. I can remind him of the visit a couple of days ahead. I start to talk about it and then he is eased into the idea of excitement. I make sure he is up early that day and gets ready and then has time to be calm before they arrive. I remind him again of who they are and I always serve food to calm him and keep his energy up during the visit. I keep the visit down to no more than two hours. (as time goes on, this time limit will dip down to no more than 20 min.)
  5. Events out. I have been surprised lately that George does not do well going out to dinner. He does well out at lunch. But dinner upsets him, he is bothered by all the people, the noise and thinks the food is bad…so why take him out? Because I want to keep his mind feeling that going out is ‘safe’ and normal. I have decided that I will only take him out to lunch from no on. The stress of after ‘4PM out the door’ is too much for him. I try to think up ‘out of home’ visits weekly – but make them calm and easy on George.
  6. If George goes out to my sister’s home and visits, he is fine. He knows the home, the people and he just sits and enjoys his time. It really gives him very little stress. If he goes to his son’s home with family, he is fine. But he goes there less often so the stress is higher. Now if he goes anywhere that he does not know the place, or many of the people are new to him – that is no longer good for him. Even though his life has been very social, he traveled a great deal and loves people— George is not his old self. I have to remember that and work around his fears and upsets…and make his life ‘safe’ as much as I’m able to do.
  7. Surprise is not a good thing for George. That is what I try to keep to minimum. If someone is in town and calls to come and say; HI. I ask them to wait a while, so I can approach George with the news and let it sink in. Let him get up and get dressed and not be too rushed. Let him know they are coming and I talk about it with a calm voice and up energy. I ask the visitor to come around 3ish…and to stay for an hour. It can be embarrassing to do this to people…but I have learned that it is worth my discomfort if George can have a nice short visit and still feel well the next day.

The point of the above tips, is to show you how I am now just easing the way for George. I try to keep him in the loop of our daily lives. But I no longer share the heavy stuff. I don’t talk about bills, emergencies like my car needing repair, the chores around the house that need to be done, or the choice of what food to eat for dinner. Those ideas and thoughts would take George into a worry and maybe a depression.

This is where the hard part starts. Because as a spouse, the sharing of daily life is what you do with your spouse. George and I will be married 30 years this September…we have been bestest friends and he had been a business professional. To leave him out of the loop of life’s pressure is totally foreign to me. But I have to ‘man’ up and know that life is now mine to oversee.

What I also have to know inside my mind? That George’s health is important to me. So is my health. That means I have to make decisions that are good for George and are still healthy for me, as the care giver. I often have to say; “I have to come first, in order to have the energy to care for him wisely.”

It’s hard to explain to others, when they just want to stop by and take George out for coffee. Some times its a good thing, some times it’s simply is a NO. Don’t be afraid to be wrong, we all make decsions that turn out to be not the wisest in the book. But do get in the habit of thinking small daily issues through. Take your time; one day of not caring, could mean two weeks of you helping your spouse through a tough recovery. Days of no energy, confusion, anger, depression…that is a hard way to learn that thinking through your daily activity choices is important everyday.

Blessings on all that you do. I wish you well with your decisions. George just had breakfast in bed and I will get him up later to sit in the sunshine for a while. Other than that, he will be resting today…healing after our fun visit with our wandering Twitter friend.  😉   francy

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One thought on “Alzheimer’s Secret – Highs and Lows

  1. Francy, your column is always so insightful. I learn new things each time I come to your site. Your willingness to share what you know, and the ups & downs are important for many who are or will be in the position of caregiver for a loved one with Alzheimer’s or any type of dementia. God bless you, Shari

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