Family

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Alzheimer’s had gradually been invading my mother’s mind for a few years. We had just begun to admit it to ourselves when suddenly, one day she had a massive stroke. Doctors thought she wouldn’t survive, but like our dad, our mom was a tough old bird too. I thought her stroke would have crossed-out the signs of Alzheimer’s, but instead, it only added to them, and we were unprepared.

Just the mention of the word Alzheimer’s brings fear and dread to us all, and we pray that it won’t happen in our family. Unfortunately, it’s a reality and we can’t bury our heads in the sand and hide. One report that I recently read, shows that in 10 people 65 and older has Alzheimer’s. In 2019, www.beingpatient.com reported that over 5.8 million Americans had this disease.

I hope any caregiver that may be reading this, will be helped, encouraged, and learn from our mistakes and our victories. It took lots of prayer with Jesus’ strength and grace to get us through. Mom lived seven more years after her stroke. My brothers and I, as well as our dad, were her caregivers.

 After two weeks in the hospital and 6 weeks in rehab, we brought her home. There was little she could do for herself except to walk with a three-prong walking stick, eat, and drink. Her talking was jumbled, and her confusion was like Alzheimer’s on steroids, however to our surprise, little by little she became more active. She actually started to read the newspaper out loud in her own gibberish language. It was quite comical. Please take note of this: It’s very important to laugh when you can because there can be many more times that you want to cry. This is a happy memory we recall during some of the most challenging days that we faced in those seven years.

A Daily Thing:

Some of the daily issues we had, was Mom wanting to go home. Late in the day, almost like clockwork, she’d start saying go home. Eventually, she was able to speak some things that we could understand, but most were gibberish that we’d have to decipher. Convincing her that she was already at home, was a daily struggle that can quickly get on your nerves. At times frustrations grew very high when me nor my dad, could make her understand it…this is when, if you aren’t mindful of it, yelling can easily start; I know this for a fact because it did for us and I never would have believed it possible. I’m ashamed to admit it, but it happened several times throughout those seven years. After saying over and over, “You Are at Home,” for what seemed like a zillionth time, we just couldn’t convince her, and frustration got the best of us. Repeating yourself, again and again, can wear on your nerves after a while.  No matter how many different ways we explained it or showed mom her personal pictures and belongings throughout the house, it never seemed to work.

Much later, we realized that we were the main cause of the escalating situation, not her…she didn’t know any better. We were trying to bring her back to the present, into our world, when she was incapable of doing so. After much prayer and lots of trial and error, we found ways to avoid this kind of thing from getting out of hand. 

There are several things you can try to help prevent frustrations from escalating on both sides, but keep in mind, what works one day does not necessarily work the next, so you’ll need to keep different tactics in your arsenal bag.

What We Did for the Wanting to Go Home Issue:

Some of the things we’d try was to say: “Okay Mom, we’re waiting on Dad to get back with the car,” instead of trying once again to convince her that she was already home. This seemed to prevent an argument from happening because we weren’t trying to convince her that she was wrong in wanting to leave. Sometimes, we’d simply put her in the car and take her for a ride. We might go get ice cream or ride around old familiar places that her mind could remember from her past.  This is normally easy for them to recall.  Their minds aren’t able to process and keep current information any longer, but they remember the past as if it just happened.  After a while, we’d ask her, “Are you ready to go home?” When she’d say yes, we’d say something like, “Okay Mom, we’re home,” as we pulled into the driveway.” Normally it would satisfy her if we stayed out long enough. This tends to happen more in the late afternoon or early evening, so if you are going to take them for a ride, this would be a perfect time, because you are satisfying their need to go home.

In regard to Mom wanting to go home, we came up with the idea to collect a bunch of keys and put them in a box. We’d bring these out and let her go through them, asking her to find the car key, so we could go. This worked very well. Normally, it would occupy her for a long time. When she finally grew tired of searching for it, she’d push the box back letting us know that she had given up; It wouldn’t be long though, and she’d want to go home again, so we’d say, “Okay, but first find the car key.” Once again, she’d start rummaging through the keys. We’d do this over and over until she stopped asking to go home, which eventually happens, or it no longer worked in which case we’d bring out something different for her to do. Keep in mind, at some point, this issue will pass for the day.

With our dad, it took a little more ingenuity. He could move around very well. With him, it wasn’t always about wanting to go home, but rather he wanted to drive the car or his truck. Simply hiding the car key was not enough dealing with Dad, however, we basically used the same tactic, and brought the box full of keys for him to search through. He’d feel certain he had found the correct key and wanted to go try it out.

A mistake people can make, is trying to keep them in one area for most of the day, wanting to keep them quiet and still…not doing much of anything. Many feel the TV will occupy them all day, but it doesn’t, nor should we try to keep them in a zombie-like state. They are still grown human beings and need the best quality of life that we can give them. You parent is moving toward the end of their journey in this world and we are all treading in some uncharted waters! Instead of saying no to him wanting to try out the car keys, which could easily turn into an argument and cause unneeded tears, we’d let him try. This actually worked very well, especially if you had lots and lots of keys in the box. It was a great way for us all to get outside in the fresh air for a while. We’d take a couple of chairs out with us…one for ourselves and one for Dad. We’d sip on a drink, check our phone, or even look at a magazine while he’d work feverishly to find the correct key for the car door…of course, he never found it. There were many times we’d be out there for quite some time and we enjoyed every minute of being out of the house. It’s important to take advantage of the little things like being outside. You’ll be surprised how it will refresh you and your loved one as well.

 

When You Need a Breather:

When you need to keep them occupied, just so you can take a breather, prepare a meal or simply go the bathroom, you might want to try this: Get a basket of washcloths or towels and bring them to your loved one to fold. This is something that’s pulled from their long-term memory, in which they are now living in. Most of the time, unless in the very last stages of Alzheimer’s, they can do it. They need something to occupy their minds and hands. Imagine yourself just sitting and sitting or walking around the house for hours on end and your hands and mind are needing something to do? This is your loved one. Their thinking is altered, but many times their body is still trying to continue in the old ways, especially in the early and middle years of this dreaded illness.

 We’d give Mom a load of towels and washcloths and start slowly folding them and ask her to help. We’d put a tray table in front of her, so it would be easy to fold and stack the towels. It takes them a while to do this, and that’s the whole point…to keep them busy and feeling like they are doing something useful, in which they are. You’ll be surprised by the precision they have. Both Mom and Dad would make sure the cloths had perfect corners, if not, they’d shake it loose and start all over. Be sure to praise them on what a great job they are doing and thank them for helping you fold. We always got a big smile from them every time we gave them praise. This would melt our hearts and helped us to forget any struggles from earlier in the day. Sometimes, we would have mom, and years later our dad as well, doing this task over and over. As long as it satisfied them, that was all that mattered. It made for a much happier day for everyone.

Finding things that interest them, is vital to your loved one’s sense of worth and well-being, as well as the caregiver. For instance, Mom always loved cookbooks and she had a bunch of them. I’d sit three or four at a time in front of her, making sure they were full of pictures. She would read them in her funny gibberish, marvel at the pictures, and sometimes cackle out loud as if she had read the funniest thing ever. It made her happy and did me good just to watch her enjoying it. I knew, if only for that short moment, there was no doubt in my mind, that she was happy!

It’s so important to try and put a grin on their face or get a cackle from them. Treasure every moment you see them smile and laugh. These will be the memories, in this time of their life, that can bring comfort to your heart when they are no longer here.

Finding things for our dad to do was a little more challenging. He was a retired veteran of 30 years serving in WWII, Korea, and Vietnam. He was a walking history book with lots of stories, and we were very proud of him. He was also an excellent carpenter with a large workshop full of any and all types of table saws and power equipment. In the beginning of his journey with Alzheimer’s, we had many showdowns with him going into the shop trying to fire up one of his table saws.  At first, we simply hid the key to his shop, but somehow, he’d eventually find it. We soon realized that he had several sets that he had put away years ago. He was like a bloodhound on the scent of prey and wouldn’t rest. I have to admit, it did keep him busy for hours sometimes, just searching in every nook and cranny. This can be a good thing because it keeps him occupied and not getting into something more dangerous. It all depends on where he is looking. After removing the shop key time and time again, we decided to give him the same box of keys that we used for the car, keeping him satisfied and avoiding a confrontation. Confrontations can easily escalate in a shouting match, due to frustration on both sides, because they’re confused and can get agitated easily. We’d let Dad go out to the shop with the box of keys and try to unlock the door. We’d stand or sit somewhere at a distance watching him carefully try key after key.

Being able to get out of the house and enjoy the fresh air for a while, can feel like getting out of prison, especially if you can rarely do this. Take advantage of getting out when you can. Even just bringing out a lawn chair, sitting with them, and asking questions from way back when, can be relaxing and you may even learn things from their past that you were unaware of.

Most times, letting our dad try key after key worked very well. Eventually, he’d tire and give up and come inside, then rummage through drawers trying to find it. Once again, he’d simply give up and that’s when we’d try to get him interested in eating a sweet treat or offer him a favorite drink.

We were constantly finding ways to keep Dad safe. Eventually, we had to pull the main electrical breaker to his shop. It’s impossible for one person to keep an eye on them every single minute. Safety can be a challenge no matter how hard you try. A caregiver will have to prepare food, do some laundry, keep the house tidy, etc. and of course leave them to go to the bathroom from time to time. If your loved one can move around pretty good like my dad, you’ll have to use all of your wits and then some, to make sure they stay safe. That’s why we pulled Dad’s electrical breaker in his shop. If he managed to find his way out there and beat his way into the shop, we had comfort knowing that he couldn’t turn on any of his electrical saws and get hurt.

Finding What Interested Your Parent:

It’s imperative to come up with many things for them to do that was of interest to them way back when; an example could be: if they were an avid golfer, get books/magazines with lots of pictures of golfing…or if they loved racing, old cars, tractors, fishing, etc., get books, magazines of these with lots of pictures.

Since Dad was a carpenter, we collected a box full of different nuts, bolts, screws, etc. and placed in front of him. He’d spend a long time examining and sorting them out. If your Dad/Granddad liked fishing, you could get a tackle box and fill it full of a variety of lures and fishing items (of course not any hooks or anything that could stick them). They most likely will sort through these as well.  Old family photos are another good idea. It’s best to have them loosely in a box unsorted so they can pick each one up and sort as they wish…remember, these should be older photos of their parents, siblings, and other relatives from a long time ago.

 

Musical Ideas:

My parents loved the “Grand Ole Opry” and southern gospel music. We bought DVDs of the early days of the “Grand Old Opry” as well as videos of older southern gospel groups. They loved to watch them. They would sing along as best they could, while they were still able to do so. These were songs that they grew up with or enjoyed in their earlier years. We tried playing the music they liked on CD’s, but it didn’t work. Music alone did not keep them entertained and occupied for very long, however the DVD’s did well. It not only brought them happiness, but it brought my brothers and me happiness as well. Seeing the smiles on their face, watching their foot tap to the beat of the music, or hearing them sing with their whole heart, was such a blessing to us! All these things can be done over and over day after day. For them, it’s like hearing/seeing it for the first time. Because their short-term memory isn’t working now, something they’ve just seen or done won’t be remembered in a few minutes.

As I mentioned earlier, what works well one day does not necessarily work the next time around, so please keep many alternatives on hand…doing so will make everyone’s life much easier and a whole lot happier.

A Persistent Parent:

There were days when our dad was persistent and relentless. As long as I can remember he’d say: “If you don’t have the proper equipment to do the job, you use what you have on hand and make it work.” That’s just what he did. Sometimes, he’d give up and look around until he found something, he could use to pry open the shop door (as you can see, the shop was a big issue for us to overcome). We caught him several times beating the doorknob with a sledgehammer, regular hammer, even a brick, in order to get it open. I can’t tell you how many times my brothers had to change the doorknob and padlock the door. He was a tough old bird, but we loved him dearly and had the utmost respect for him. Even though there were days when we were at our wit's end, we’d still try to show our dad the dignity, honor, and respect that he deserved.

We had to work harder with our ingenuity in occupying our dad. Most everyone has a junk drawer, so we gave it to him to look through. We’d go through it first and remove anything that could possibly hurt him or he could use to create a dangerous situation for ex: a simple spool of thread can get wrapped around the fingers tightly and cut off circulation. Before you know it, they can be screaming in pain and you are trying to hold them still while you cut it off!

The junk drawer work well for both our mom and dad. They each examined the contents very carefully and started their own little pile. We didn’t understand what they were doing, but that didn’t matter; all that mattered was it made sense to them.

Going back to when we were caring for my mom…after she had stabilized and was able to communicate and get around better, which took nearly 2 years, I was growing quite weary by then. My dad was old and needed our help in taking care of her, even though he did a fantastic job.

 

Keeping My Sanity:

 I’ve always wanted to do some kind of craft, but never really had the talent for it. One day as I was sitting with, about to go bonkers after answering the same question over and over again, I found a video on how to make wreaths. I watched it and low and behold I learned to make wreaths. You may ask, “what does this have to do with Alzheimer’s?” Nothing at all…It had to do with keeping me sane in the world of Alzheimer’s.

The daily struggles that come when you have to be the parent to “Your Own Parent,” can literally drain you. You will wrestle with guilt vs. what’s best for them, at any given time. As a caregiver, you have to take care of yourself as well, in order to look after your loved one on a regular basis. Too many caregivers get weary, sick, and burn out to the point that their mind and body breaks down. It’s extremely important to find ways that will help you both have a better day. This is where my hobby of making wreaths began for me. It was something I could do right there with my parent by my side. You may be surprised how much release it will give you and entertain them as well, when you find a simple hobby to do while there with them.

I gathered up some supplies and brought them to my parent’s house. With Mom sitting next to me in the living room, I placed my supplies on a table; Simply unpacking everything was entertaining to her. She’d smile and was amazed at the pretty colors of mesh, ribbon, and all the glittery materials.  As I watched her examine the different items, I began to think, that maybe, just maybe, I was on to something more. Could this possibly help keep mom entertained, when all the while, I was doing it to try to hang onto my own sanity? It turned out when I’d work on the wreath, with my mom in tow, it kept her entertained, happy and made it a time of peace for us all. That’s why I thought this hobby idea…this little tidbit of information, might work for you too.

Continued in Part III:

I sincerely hope writing about our experiences, “Facing Alzheimer’s with a Parent part II,” will be of some help to caregivers, or those who will be facing this situation with a parent  in the future. There is no cut and dry answers and no miracle solution to the daily struggles, but maybe some of the things we learned with our own parents, will help others. I will conclude this article in part III. I’ll share about our dad being a smoker and drinker before he accepted Jesus as his savior, and the struggles we had with that. These were very challenging. Please check back later for Part III.  If you don’t mind, kindly let me know if any of what I’m sharing, is being of help. I’d love to hear back from you.

 

 

 

 

 

 

 

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