The Worst and Best of Being a Caregiver Part II

The best part of being a caregiver, for my mom with dementia, is when we seem to actually have a real conversation:
“Mom, you ever getting up today?”
“You were up late last night, huh?”
“Do you want to sleep another half hour?”

Then, there are the times when Mom obviously gets a joke. When she’s the first one to laugh it’s clear she understood. One day, I was relating a story to Dad about my golf game that morning. On one shot, my ball hit a tree and landed behind me. Dad was taking off his shoes, not paying full attention to the story. But Mom, well, she burst out laughing. Did she really understand or was it the tone I used as I related the incident? I don’t even care. I just loved that she laughed.

The best part of being a caregiver is when Mom expresses her gratitude. When Dad hands her a cup of tea, or I serve her some pie, she looks directly in our eyes and comes out with a very articulated, “Thank You.”, as if she’s never had these things before. Even after a trying time in the shower, when it’s all done, she’ll put her hand on my shoulder and tell me, “You’re nice. Thank you.”

The best part of being Mom’s caregiver is watching as she recognizes a familiar face. If I spoke of my brother-in-law, Manny, to Mom, she would only give me a quizzical look. But, when Manny walked in recently for his annual visit Mom’s eyes opened wide and her arms went out for a hug.

The best part of being a caregiver is when I see Mom rocking and swaying to some music all on her own. Most times, I get her up and moving when I’m dancing but every so often I see her enjoying music by herself. It brings back memories of the Mom I used to know.

The best part of taking care of Mom is when she agrees with me! Sometimes, she understands what it is she’s agreeing to, sometimes not. No matter to me. The entire day becomes easier when she agrees with what I want us to do.

The best part of being a caregiver is watching Mom participate in activities she used to do. Sweeping the floor, browning the hamburger and folding laundry are all chores she can still handle.

My point is, there are many ‘best’ moments being a caregiver and for me, they far outweigh the worst moments.

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The Worst and the Best of Being A Caregiver Part 1…

Being a caregiver is not always easy or pleasant. We all know that.But that shouldn’t be the case. After all, we’re taking care of loved ones who are precious to us. In many cases, that loved one in our care, has given us a wonderful life already.

Well, the worst part for me is when my mom can’t communicate something she feels is very important. She has lost most of her speech and the words that she’s able to utter don’t make any sense. When they seem to make sense, I never know if she knows what she’s talking about. Oftentimes, yes means no and no means yes. Mom gets so frustrated at times like this she ends up storming off, insinuating that I don’t know what I’m talking about.

The worst part is I can no longer drink wine in front of mom. She wants some too. I think it’s ok if she has wine on occasion but she guzzles the entire glass in one fell swoop!

The worst part is giving mom a shower. She’s scared and cries. It’s just hard to see your mom in such a state.

The worst part is hearing mom use curse words. She was always a proper lady. Now, those are the only words she uses correctly!

The worst part is seeing mom with her finger up her nose. The tissues may be right there in front of her but she doesn’t know to use one. When I give mom a tissue she just wipes her nose. She’s forgotten how to blow. So, this goes on all day long.

The worst part is when mom thinks I’m out to get her, to harm her in some way. I’m being gentle, soothing and loving and she seems to think I’m a criminal who wants to steal her sweater or a rapist or something awful like that. I don’t know what she really thinks but this behavior sure is hard to take.

The worst part is when mom wants to help in the kitchen. She used to own that kitchen, whipping out dishes right and left that had the whole town drooling for more. Now, since she doesn’t know what to do, mom is simply in the way. I’m afraid she’ll get burned or cut. The kitchen is no longer a safe place for mom.

Ok, so it’s not easy and now we know some of the reasons why. Stay tuned for Part 2- The Best Parts of Being a Caregiver

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Take It To Another Level

Whether you care for a family member or you work in the field, find out more about who your patient was before their memory loss. When you pay attention to some of the little things that were special in their lives you will be able to provide a level of care that not all dementia sufferers are getting. That level includes the respect that your loved one needs and deserves.

Some things are obvious: Did she enjoy television, or maybe prefers listening to music? Did she usually shower or take a bath? Was bathing in the morning or evening? Did he prefer to be clean shaven or sport some facial hair?

While being aware of these obvious behaviors is essential, it’s equally necessary to learn about the deeper characteristics and nuances of your patient or loved one.

My mom was always an outgoing, social and proper woman. It was important to her that other people had what they needed and that everyone was happy and comfortable. I’ve noticed this hasn’t changed with her since she’s had dementia. No matter what you say, she will not sit down to eat a meal until everyone sits and has their meal too. If mom is told repeatedly to sit down before that time, she will become agitated and maybe even storm out of the room. If my mother is not able to say a friendly, “Goodbye! We’re leaving for the summer now.” to the librarian, she will get agitated-in public. This agitation can be avoided by knowing what she really wants and caring enough to give it to her.

On rare occasions we still have small family gatherings to celebrate a birthday or holiday.  I think we all know these times are hard for someone with dementia. My mom can’t follow a conversation at all. Nor can she add her two cents as she is unable to speak well. She feels the most comfortable taking care of others. Mom will offer her food, her beverage and her seat to everyone. She’s 87! Yet she still needs to take care of others. Rather than insist that she sit down and eat, I try to help her help others. She appreciates this and will be less prone to confusion and agitation.

For years, I’ve noticed how my mom likes to set a nice table. She still enjoys taking the time to spread the table cloth, add a centerpiece, be sure the dishes and utensils match and place a folded napkin at each place setting. Now, my mother has progressed to a point where she can no longer do these things, but she will stand and watch in delight as I arrange and rearrange until we see perfection. Just because she can’t do it doesn’t mean she no longer cares.

I could give more examples but I think you get my point here: Show respect and take the time for the little things. When all is said and done, you’ll have many more happy memories and a lot less tantrums.


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Shift The Focus Part II

Communication is very tough. If your loved one has vascular dementia, caused by a stroke, the ability to speak and make sense is lost. Sure, you could be all depressed about this. Or, look a little deeper. My mother laughs, all the time. She’s not always amused. Often, it’s a sarcastic laugh, indicating she knows very well the predicament she’s in.  Other times, she’s easily amused and her eyes show it. Mom will often communicate a good mood by singing. Sometimes, it’s just “la, la, la, la, la, la” but there is most definitely a song in her head. Apathy is communicated by staring out into space with a blank look. The person with dementia needs to express anger too. Stomping off, tossing things, saying bad words, and slapping is how my mom shows anger. It’s so important to brush this off. We can’t blame our loved ones for being angry. Sometimes we all have to vent.

Making a choice is something my mother is unable to do 90% of the time. So, I make the choice for her and she communicates her appreciation with lots of thank yous when I do that. Rather than getting frustrated because mom can’t answer a simple question and make a choice, I get beyond that point by not giving any options in the first place. It works because I know her so well. (If you do not know the person you are taking care of personally, it’s important to speak with family members in order learn about your patient’s life before the illness.)

So you see, communication IS something your loved one CAN do and don’t you think otherwise for  a second.

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A Shift in Focus- Part I

 Being a caregiver takes it toll emotionally, especially if your patient is a family member. It’s often difficult to not get hung up on all the things she can’t do anymore. It’s becomes too sad to think about the person who once was, the social butterfly or the active politician, the all-around athlete or the college professor, the avid reader or master chef. Whenever these thoughts creep up we need to shift our focus from what the person can’t do to what he/she can do. When we do this effectively the moments of joy happen more often.

Let’s start with the kitchen. Any kind of cooking is out of the question once your loved one gets to the end stages of this disease. However, peeking into the pot or the oven and watching the finished product coming out brings joy to my mom like it’s Christmas morning. Even making the salad is too difficult but mom can still use a peeler on the cucumbers, carrots and potatoes while I work on the lettuce and the dicing. Washing dishes can be done if the dishes are soaking in warm, soapy water with the scrubby sitting right on top. Putting food and condiments away after a meal may be too confusing but if given a damp sponge your loved one will spend plenty of time wiping the counters and tables down.

The person with dementia doesn’t think about housework anymore but it can be done together. I dust while mom runs the vacuum, after I get it out, plug it in and point it in the right direction, that is. My mother can sweep and wash the floor too, if I get her all set up. Your loved one won’t be the best at folding clothes but if you watch, they’ll lovingly put lots of time and effort into this chore.

As the body slows down, walking the road fast or climbing a mountain is out of the question. It’s important, as we all know, to keep the body moving. So, mom takes a walk most days. Of course, someone must go with her. She can’t go too far and she walks so verrrrrry slowly, BUT she walks! And gets fresh air. Sometimes I march in circles around her to pick up my pace. Mom thinks that’s hilarious. Another activity we do in our house to get mom out of the chair is dancing. If the music is upbeat, and I’m dancing too, she can hardly resist joining in.

Naturally, someone in late stage dementia cannot drive. Going for a ride is still very enjoyable and mom gets her ride in everyday. As I write this, autumn in New England is bursting with color and the views are breathtaking. I don’t think your brain has to work properly to appreciate such beauty. Even if you’re driving around in a metro area the sights are plentiful. The things you see create conversation, albeit one sided, but still…

The ability to speak and make sense gets lost with dementia but communication goes on. As we know, much of our communication is done non-verbally ,with facial expressions and other body language. In Part II of Shift The Focus I’ll write more about this communication and how shifting our focus can create those moments of joy we strive for each day as cargivers.

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Confused? Listen To The Music Play

Music can be a tremendous help in easing the confused brain of those with memory impairment. With speech being so difficult, the house can be very quiet.  I think the distraction of music creates a more enjoyable atmosphere for everyone concerned. I like to mix up the genres because each type of music does something different for my mother.

On days when mom is more agitated, I play classical music for her. She moves her arms like a conductor even when she is sitting in her chair with her eyes closed, half asleep. Or, at breakfast, her spoon becomes her baton as she conducts her orchestra out there somewhere. When we’re in the car, I sometimes play music from the Big Band Era. She will actually attempt to sing along with these tunes but unfortunately, her speech can’t keep up. Children’s music, like Twinkle, Twinkle, Little Star and Old McDonald’s Farm are also songs that are still deep in the memory of dementia patients. When there is a birthday being celebrated my mother knows all the words to Happy Birthday To You. Christmas can be everyday in your house because those melodies are also ingrained in our brains. On days when I’m in an upbeat mood I’ll play my favorite Grateful Dead concerts and mom will actually get up and dance with me!

Playing instruments for someone with symptoms of dementia is also a good way to get their mind off their confusion. When my brother, Steve, plays guitar or when I play piano for mom, she smiles with delight and claps at the end. A few years back, when mom knew she was losing her memory, she started playing piano. However, she no longer seems interested in playing herself so I will continue to provide her with music in her world.

I keep all our music on an iPod and use a portable sound dock so I can take it anywhere, inside or out. Mom isn’t too crazy about ear buds and headphones so that’s not an option for her anymore but it might be for you. That way, you can watch television or read a book or…..

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It Takes A Village

It Takes A Village
“It takes a whole village to raise a child”
Let’s look more closely at these words from the old Nigerian proverb, because it doesn’t have to be just about children. It can apply to the care of our aging loved ones as well.
In order for those with dementia still living at home to get the highest level of care possible, care they deserve so much, at least two caregivers works best: Two caregivers in the home and the rest of the community, or village, for support.
Jobs should be clearly defined. The primary caregiver tends to the patient while the secondary caregiver runs the house, for example. Or, the primary caregiver(s) takes the day shift while the secondary caregiver(s) takes the night shift. One caregiver can attend to basic needs while the other covers exercise and social activities. There are a number of ways the jobs can be divided but it takes more than one person to remember the pills and schedules and all the others things necessary in taking care of our loved ones.
While the lives of those with dementia seem to come to a standstill, the lives of the caregivers go on. That means there are errands to run, appointments to keep, housekeeping to do, books to read and Red Sox games to watch. Everyone has their own activities that keep them busy. This humdrum part of our lives, which we may have dreaded in the past, becomes our respite, our time to take a break. And, while we scurry about, our loved one sits in a chair, staring out at space, thinking God only knows what. Although it may seem alright to leave your mom at home for short periods of time, it can easily increase their level of confusion. This confusion then leads to unpleasant episodes for her later in the day. And, knowing your loved one is home alone and confused will add stress to your day whether you realize it or not. This additional stress increases the chances of mistakes: car accidents, missing appointments, wrong turns, spilling coffee, errors in medicine dosage, general forgetfulness and I haven’t even started on the negative effects of stress on our bodies.
There are the times when the caregiver becomes sick or hurt. This will happen and you’ll need a backup to take your place immediately. My dad had some awful sciatica and was forced to use a walker for a couple months. He was useless. He couldn’t drive, carry things or sleep well. Then, in comes the secondary caregiver to the rescue! (The needs of the caregiver are very important and I will address this issue in a future post.)
Each caregiver brings something different to the equation. In the case of me and dad, he cares nothing about taking care of mom’s nails and hair. He prefers not to go to church. He doesn’t play music for her. So, I cover these areas of mom’s needs. Dad does the things I’d rather not do, like clean her false teeth. It’s in this area where the community comes in. Support groups for caregivers, where ideas are shared and frustrations vented, are being set up all over the world every day. The number of books to read on this subject, found in bookstores and libraries, grows by leaps and bounds every year, and the internet can be a source of real comfort in the daily struggle with this disease, whether for the research and learning aspect it offers or the social media connections that are now so popular.
As this ugly disease progresses, you’ll find it necessary to double team. Persons in the latter stages of brain disease can be quite obstinate. It took both dad and I to get mom into the shower yesterday. When you are double teaming all day and night when do you get a break?
As I’m writing this: Mom is still sleeping. Dad just told me he’s going into the bathroom for a spell, could I listen for when mom gets up? If she wakes, with nobody around, she’ll be lost and won’t know what to do. Again, more than one caregiver……..need I say more?

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Stop Asking Questions!

I’ve learned to stop asking questions, if possible. Mom’s vocabulary is very limited now. She simply does not understand most questions. Especially two and three part questions. You might be surprised to listen to yourself when you speak. So many of us ask a number of questions before the person can even process the first.
“What would you like for lunch, mom? Maybe you’d like a sandwich? Maybe just a half of a sandwich today, huh? You didn’t eat the whole thing yesterday.”
In the meantime, mom is still trying to figure out what lunch is, never mind what kind or how much. When my mother is up against this type of confusion she starts cussing. Her favorite words are ‘shit’, ‘god damn it’ and ‘jesus christ’. She’ll storm off into another room, maybe throwing something before she goes. Usually she throws her tissue, always in her hand, or sometimes, she’ll toss a nearby chair. At this point, it could be another half hour before she calms down enough to come back and eat lunch.

Asking one question at a time, and making sure she understands it before moving on, smooths the entire conversation over and allows for a relaxing, enjoyable lunch for all.

“It’s lunchtime, mom! I’m going to make you a sandwich. Could you come help me?”

Now, I’ve got mom into the kitchen and she’s watching me put out the lunch ingredients on the counter. Working together, we make our sandwiches. Mom watches what I do and then she does the same thing. (It’s much easier if we are both eating the same lunch.) We spread out mayo, lay the ham nice and neatly on the bread, then cover it with the second piece of bread. I cut the sandwiches in half. Mom loves yogurt now. She’s happy to choose her own if I show her where they can be found in the refrigerator. I add some chips and we head out to the porch to sit down and eat. She appreciates the help and always says thank-you.

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Time To Take A Shower

The time has come for mom to take a shower. There’s no way around it. It’s been 5 days. Yesterday she promised to go upstairs with me and get cleaned up. I helped her undress but when I turned the water on she went running. Today is the day. Somehow, I will get her in that shower.
In the beginning stages of mom’s memory loss she could go into the bathroom by herself, start the water and shower. After some time, she forgot how to operate the shower so she spent the time in the bathroom cleaning. Her forgetfulness progressed to the point of not even understanding why a shower is necessary. She now claims she doesn’t “do that”. She went from showering every other day to being forced into the shower every 5-7 days now. Mom is afraid of the water. It seems to hurt her and/or the temperature is never right. She cries and cowers in the corner of the shower stall. She doesn’t know what to do in there or why she’s there. She also does not like to be naked at all.
Mom is very attached to dad and if he goes on a little errand in the car she really wants to go. One way we get her in the shower is to hold this over her. “After you shower you can go in the car with dad”, I plead. “Oh, ok” she says again. Knowing how much mom enjoys music I head upstairs before her and turn on the iPod. I choose dancing music of some kind. I shut the windows and turn on the small space heater. Mom enters the room and I’m already dancing. She sees my happiness and joins in. As I help mom undress, I sing and we dance. The distraction works well. The shower head has been replaced with a hand held. Now, I get mom in the shower before I even turn the water on. When I turn it on, I spray the floor. She is still dancing. As the temperature adjusts I start to spray mom’s feet. I slowly work my way up, assuring her that’s it ok, I’m here to help. Since she doesn’t understand what it means to turn around to get her back wet, I start singing the Hokey Pokey…..and she starts turning around. Before you know it, she’s been all soaped up, rinsed and we’re done! I turn off the water and wrap her tightly in a very large towel. As she holds on to that, I grab another towel and pat-dry her legs. It’s about speed and gentleness. I’m either talking through what we’re doing or singing. After drying I help mom on with her clothes in an order that will give her the most warmth, Depends, shirt then pants. She can put her socks and shoes on by herself.
When mom comes downstairs, all showered and clean, dad showers her with hugs and kisses and they go off in the car to get the paper and take the trash to the town dump. Everyone is happy. We can all relax about the shower now for at least 4 days.

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