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How can we not let caregiving get in the way of loving him/her?

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Be Present – Visit often

2019 John Ellsworth
2019 John Ellsworth

I see John daily in his Assisted Living area. I am so blessed that we moved to a Continuing Care Retirement Community back in 2006. That was long before he showed any signs that he would develop significant issues with his cognitive abilities. John didn’t show any before he was 72 or 73.

Because we moved here I simply take my own power chair and go to the breakfast area where he now lives. That is so very much simpler than having to get into my car and drive to a different facility.

Be Grateful – always

For me, I’m always incredibly grateful that I have MS. Imagine that! But we would still be living in our own house and I would be alone there. I’d have to deal with his more severe level of care myself or have an aide to move in to do the work. So yes, I’m grateful that my MS caused us to make the move when I was so very young (only 58 and he just turned 65).

Be Practical

I hope that you have heeded the wise advice to consider the practicality of making this decision before it’s needed. Staying in your own home sounds like a good idea. But remember: we all do age and will eventually need care. My favorite aunt told me a long time ago: “When you do go looking for a place, be sure to see where you will be when they are taking care of you. The apartments can always look good.” She was so wise.

I’m not already exhausted and am much more able to get his day started with a pleasant experience. Any way, so now caregiving is not getting in the way of my loving him.

We’ve found that he is much more available in the morning. As many others, he has that ‘sundowning’ which makes his afternoons and evenings quite challenging.

Be Loving

Every morning I greet him with a big smile. I am able to be with him right after the aides have gotten him showered, dressed and walked out to the breakfast area. I’m not already suffering from all the cajoling necessary to get him ready.

I’ve learned not to ‘meet him where he is’. So if he’s not making sense, I don’t try to convince him otherwise. So what if he’s mistaken or that something else is truth. You simply cannot win arguing with your loved one’s dementia riddled brain. They are really not doing it ‘to you’, they’re only ill.

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When is enough enough? When is caregiving too much?

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Some friends had been going to the monthly support meetings run by the Alzheimer’s Association. As our loved one’s abilities were lessened by the disease, more and more was happening during the month. We knew we wanted and needed to be together more often.

We did get together weekly. We ran what amounts to our own confidential self-help group. The 12 Steps for Caregiver.pdf is our beginning point.

A Social Worker was invited and asked to speak on just this topic.

Rather than a prepared talk, she simply brought a water glass, about 1/3 filled with water and asked one of us to hold it. Then she introduced herself, gave a bit of her background. She asked us to go around and do the same.

Meanwhile the member was still holding the glass. After a bit our speaker asked if it was getting heavy yet and if she could hold it just until the rest of us finished the introductions. Clearly by then it was getting to be a bit much.

Now the speaker asked if she thought she’d be able to continue to hold for the rest of the hour, how about until bedtime, how about for a week…

By then our group got to understand the meaning of “enough is enough”.

I’ve been thinking a lot about the applicability of that image to so much.

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When is it time to ask for help? OK Know who you can call

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Caregiving Crisis Indicators:

If you’re already in a crisis, it’s too late! These are the obvious times to immediately call for more help. If you’ve already found a facility for your love one’s next level of care, great! Call them. If not, find one NOW!
  • The Caregiver’s support team cannot or is not available to help
  • Caregiver(s) gets sick
  • Caregiver(s) begins to have or has had an accident
  • Other priorities (like the children) require the Caregivers attention

Who are in your Personal Support Network and how can they help.

We are only human and cannot carry it all alone. We burnout without help.
  • Make family aware of your situation as early as possible. Waiting is simply unfair to both your loved one and the family members. Once loved one is in later stages of advanced dementia may be to late for them to say whatever they may need to say to each other.
  • Let family and friends know what you’re facing. It will be easier to ask for their help at the early stages when the needs are likely less.
  • The same goes for your friends and neighbors. They may or may not be aware of some early changes. It’s a conversation friends may need you to have with them. It’s may be simply unfair to not include them.
  • We all have doctors, lots of doctors… Keep them involved and apprised of changes you are seeing in your loved one. I have learned that it’s probably best to do this sooner, rather than later. My Primary Care doctor knew of the Neurologists who did my husband’s evaluation and enrolled him in a Clinical Trial for Early Stage Alzheimer’s. She also got us to the evaluation for driving, when it became time for to take over that duty. Having our doctors involved was invaluable when the time came for John to need care in the Assisted Living facility.
  • Learn about the National Alzheimer’s Association. Please don’t allow that ‘A word’ to scare you. Remember dementia covers a large spectrum of conditions which have an impact on cognitive capacity. They have so much useful information both online at alz.org and in local meetings and workshops. They helped educate me a great deal.

Make a Call in Case of Need Notebook

Organization will be vitally necessary for you as the disease continues. It is much easier to do this early. I really wished I had done this a lot earlier. It would have been easier to have organized my own list earlier. Later on I rearranged my myriad post-it note stack of numbers. List by care assistance category: Family, friends, doctors, social worker, facility, etc. For each category, I listed their: name, phone number, work number, cell number, email addresses, preferred method/times of contact, medical specialty, or sort of help they may offer (companionship, shopping)
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3 Things I really know about John’s Alzheimer’s:

These are the 3 things I really now about my husband’s Alzheimer’s.

I didn’t cause Alzheimer’s

Alzheimer’s is a brain disease. He’s not forgetting things on purpose. Doctors do not know what causes the disease. I need to really understand that I did not cause it.

I can’t cure it,

It can’t be cured or stopped by doing more crossword puzzles or by eating less red meat or sugar, or by staying out of the sun, or by any other active measures.

I can’t control it

The best I can do is to love him. I can learn to accept him for wherever he is right now. And I need to learn to accept that where he is today is not likely to be where he will be tomorrow.

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What can we do on those Blah Days? When everything goes wrong?

Draw More Accurately

Today nearly everything went goofy

  • The alarm didn’t go off so I was late getting to see John
  • It was raining and still hot and steamy
  • John hadn’t slept well so he wasn’t able to walk to the table
  • The nurses were not particularly helpful moving his chair and I can’t
  • And so on…

What’s a lady to do?

When I got back to my apartment I sat down to read my emails. I noticed one from my art teacher. How fortuitous!

That sent me looking back over some of my early lessons that cheered me last year. Here’s the one I stumbled across. Enjoy!

Draw More Accurately

So whenever I get like this I’ve learned that doing something arty can make me feel better. I’m getting a fresh canvas out and I’ll have something new to show you next week.

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Happy times can be had even with Alzheimer’s

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John, Nick & Chris in June 2019
John, Nick & Chris in June 2019

Even though John’s condition is deteriorating he perked up when he got this visit from his son, Nick and his girlfriend, Chris.

On days like today it’s difficult for me to realize this visit happened just a few months ago. Nick is not able to visit very frequently so it’s important for me to stay in touch. It’s difficult for both he and I to remember to make the calls or texts.

2019 John Ellsworth

On days like today it’s difficult for me to realize this visit happened just a few months ago. Nick is not able to visit very frequently so it’s important for me to stay in touch. It’s difficult for both he and I to remember to make the calls or texts.

At breakfast today I snapped this of my John. His eyes are not as clear blue as they were and I miss seeing him as lively. But he is still able to be with me every morning. I hold his hand and spend time, precious time with him.

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Music and Memory Walk

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My beloved John has just finished his first walk of 1 complete mile this year! It was a fund-raiser for this great program that allows Alzheimer’s patients to pre-load iPods with lots of favorite music from their youth. At the end stages of this disease, music is often found to be one way they can regain a bit of connection to this world.

I’m so thrilled that he was able to do this. His life was spent doing good for others and he still enjoys the outdoors.

Three years ago we spent a lot of time going through his music collection. He had CDs from Louis Armstrong to the Beatles. He added some Mozart and Schubert. So he has a wonderful eclectic playlist!

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2019 Music and Memory Walk

My Munsell exercises just had to wait till tomorrow!