Want To Help Someone Who Is an Alzheimer’s Caregiver? Here Are Some Tips

Dealing with my mom was especially difficult, mostly because of the lack of help. Unfortunately, due to of her type of dementia — frontotemporal dementia — it was almost impossible to ask for help because of her behaviors. In hindsight, I suppose, there were small things that could have been done to help lighten the load. The thing is, when you’re in the thick of this kind of caregiving, you are the one who is often sidelined……………………………… you become a prisoner to your loved one and your home. You don’t have time to reach out, check in and let friends and family know that you’re OK.

Caregiving is about survival. It’s about getting through the day (and, sometimes, the night). It’s exhausting work. And here’s the proof: According to the Alzheimer’s Association, in 2013, 15.5 million caregivers provided more than 17 billion hours of unpaid care valued at $220 BILLION.

So if you know someone who is caring for someone with Alzheimer’s disease or another dementia (like FTD), do something. They probably could use a helping hand from time to time, but don’t expect them to call you.

If you are, then you’re kind of being a jerk because it’s not about you. At all.

I found this article by Marie Marley on the Huffington Post blog. It speaks to this issue, and gives you — the friends and family of that person caring for someone with Alzheimer’s disease or other dementia — ideas as to how you can help.

By Marie Marley
Originally appeared on the Huffington Post blog

Nancy is the primary caregiver for her husband, George, who has mid-stage Alzheimer’s. It’s exhausting work. She’s on call 24/7 and often feels overwhelmed by her responsibilities, which seem never ending. After four years of this, she’s burned out. She doesn’t have any time to herself and is neglecting her own health. Furthermore, her heart is broken as she watches George’s memory and functioning steadily decline a little at a time.

Sally — Nancy’s best friend — stands by and watches as Nancy becomes more worn out by the day. Sally would like to help but she doesn’t have any idea what to do. Every time she asks Nancy how she can help, Nancy just says, “There’s really nothing you can do.” Sally takes this at face value and after a while stops asking.

According to the Alzheimer’s Association, 15.5 million people are serving as caregivers to people with Alzheimer’s, providing over 17.7 billion hours of unpaid care every year. Carrying out their duties has a negative effect on their physical and mental health. (See my previous article, Alzheimer’s Caregiving May Be Wrecking Your Health, for more details about the impact of caregiving — especially taking care of a loved one with Alzheimer’s.)

These people desperately need all the assistance they can get. It will help them preserve their own well-being. It will also help them improve their caregiving since no one can be a good caregiver if they’re burned out all the time.

With so many people being Alzheimer’s caregivers, chances are good that you know one – either a friend, relative or neighbor. And chances are that you’d like to help, but like Sally, you simply don’t know how.

Many Alzheimer’s caregivers are deeply dedicated and feel like they should be able to “do it all,” and they are often so burned out they can’t even imagine how anyone could assist them. In addition, they may be reluctant to ask for help because they don’t want to impose upon people and because they’re afraid people will refuse to help.

So if you really want to be of service, instead of just saying, “Let me know if there’s anything I can do,” you may need to figure it out yourself and volunteer for a specific task(s).

Here are but a few things you can select from:

1. Help clean the house
2. Take over extras from a meal you’ve cooked for your family
3. Do the laundry
4. Do the grocery shopping
5. Pick up medicines from the pharmacy
6. Volunteer to run other specific errands
7. Mow the lawn and/or do other yard work (assuming the person doesn’t use a lawn service)
8. Visit and just let the person talk about feelings 
9. Drive the person with Alzheimer’s to their daycare center (if they’re going to daycare)
10. Take the person with Alzheimer’s to the doctor
11. Take the person with Alzheimer’s out for a drive
12. Look after the person with Alzheimer’s in your home for a few hours

With a little thought you can certainly come up with additional tasks. Items 9 – 12 are especially important because they will give caregivers some badly-needed time alone to rest and recharge their batteries. But whatever you select, try to be specific and try to volunteer to do it on an ongoing basis. Make sure you will be able to continue your help before you make a commitment.

I can tell you from my personal experience as an Alzheimer’s caregiver for seven years that anything you do will indeed be most helpful. I had no assistance and furthermore, I didn’t even ask my friends to do anything for me. I only wish I’d read an article like this one back when I was a caregiver. It could have made a big difference in my daily life, and would have significantly reduced my stress. It also could have prevented my health from deteriorating as much as it did.

So the next time you see someone you care about serving as an Alzheimer’s caregiver, consult this list, or come up with a task(s) on your own, and simply announce to the person that you are going to do it and tell them when you’re going to start. He or she will probably be greatly appreciative, even if initially hesitant to ask for your support.

Can anyone think of other specific things that could be done to help an Alzheimer’s caregiver?

Marie Marley is the award-winning author of Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Her website, ComeBackEarlyToday.com, contains a wealth of information for Alzheimer’s Caregivers.

Dear Stress, We Should See Other People…

Dear stress...

Reverse Empty Nest Syndrome

http://www.flickr.com/photos/run_dorkas_run/When I walked into the front door of my mother’s home, a little over two weeks had past since my last visit. Because of the influenza epidemic that turned Arizona bright red on the “flu view” map of the U.S., the home issued an edict banning practically all visits until it subsided. They told me that if I was healthy, I could check in on her as long as I wore a mask and doused my hands in sanitizer……………………………. I think they felt sorry for me. I sounded completely lost when they called to say no visitors: “Oh. How long? Really? I, mean, I’m fine. Can’t I just check in on her once in a while? I just worry.”

Unfortunately, my own immune system was obliterated not 24 hours after the ban was put in place.

Great timing.

Before this, the longest I had gone without seeing my mom was, maybe, 48 hours……………. When she spent time at the geriatric psych ward last February, I was told I had to wait for her to be assessed.

Torture.

Letting go is not my thing.

This time, I was too sick to get out of bed. Too sick to get in my car. Too sick to feign good health just so I could see her. I really missed my mom. I felt empty. Alone, really. Even though my mother can’t talk to me, her presence, while it makes me sad on the one hand, also gives me comfort. Of course, in some ways, this is what it’ll be like when she’s actually gone, and if this is a sign of things to come, it won’t be the relief I’m so desperately seeking.

Life without stressing over her wellbeing, her care, getting kicked out, her flooded diapers, if she’s in pain, Medicaid, finances………………………….

I feel physically, emotionally and mentally sick. I am physically, emotionally and mentally sick. Who am I kidding? Sure, this might be the flu, but it’s also years of fighting the disease that has consumed both my mother and my father.

I don’t expect either parent to be alive when I turn 40. That’s four years from now.

A reverse empty nest.

Last Monday, despite the ban, I decided to visit my mom. They said I could. I walked in expecting to be turned away. The thing is, I was really worried about her finger nails. What if they cut her nails too short or what if they didn’t cut them at all and she snagged her nail on something? What if she has a painful hang-nail? I brought my clippers.

I am perpetually drowning in the minutiae.

***

“Hey Patty, I know there’s the ban, but can I please see my mom? I’m not sick anymore.” 

“Hi Kathy, Sure. How are you feeling?” 

“I’m OK. I just miss my mom is all.”

“I know. I would feel the same way. I’ll give you a mask; just be sure to use the hand sanitizer.”

“Should I leave my bag here?”

“I don’t think that’s necessary.”

My mom’s asleep. Her head is hanging to the right like a rag doll. I take a black sweatshirt, fold it up and tuck it beneath her neck. The room is warm and  her radio is playing NPR. Aside from her crooked neck, she looks comfortable. I place my bag on the console nearby and plop down on the arm of her beige pleather chair. She finally wakes up, turns her head and stares at me. I smile. Of course, she can’t see my smile… I’m wearing a blue surgical mask that sits awkwardly on my nose. I squeeze the metal band on the nose in hopes of it fitting a little better (don’t these things come in small?)……………. UGH, now my glasses are fogging up. I consider taking the mask off… just so she can see who I am. What if she forgot who I am? It’s been over two weeks? I decide against removing the mask. Instead, I take her hand and hold it. She can’t really hold my hand; her brain isn’t firing off a signal that would tell her fingers to wrap around my hand.

A few seconds pass and she starts yelling.

“It’s me! Your daughter! I love you.”  She’s either horrified by my presence or saying hello.

Hard to tell.

Mom’s roommate is in the room. I’ll call her Margie, though that’s not her real name.

“Hey Margie, how are you? Have you been taking care of my mom?”

“Oh, sure.”

I don’t want to stay too long, it’s already 9:00 a.m. and I’m late for work. I rub mom’s head until she falls asleep again……………………………. I look at Margie and ask her to take care of my mom.

She obliges, of course.

I walk outside, talk with some of the caregivers, get in my car and drive to the office.

Just your typical Monday morning.

>>Flickr pic by Run Dorkas Run

Caregiving: An Act That Can Never be Repaid & That’s OK

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You’re Not In This Alone

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The Alzheimer’s Association 24/7 Helpline provides information and support to all those who HELP! Call TOLL-FREE anytime day or night at 1.800.272.3900

How You Can Help Stop Alzheimer’s

Alzheimer’s Registry Aims to Wipe Out Disease

Originally from AARP Blog and posted by 

What if you could play a part in preventing Alzheimer’s disease? Maybe you can. The Phoenix-based Banner Alzheimer’s Institute (BAI) has established an online registry for those at risk of developing a disease affecting more than 5.4 million Americans.

Many signing on are adult sons and daughters involved in the caregiving of a parent with Alzheimer’s. The ultra user-friendly Alzheimer’s Prevention Registry is a national initiative that connects would-be sufferers with researchers. Participants learn the latest developments in the field and have the opportunity to participate in prevention trials. There’s also an online community.

The goal is to get 100,000 people in the registry by next July. Enrollees include Nancy Hetrick, 45, and her three sisters. Hetrick’s father developed early on-set Alzheimer’s in his 50’s. His father (Hetrick’s grandfather) was one of 14 children; all developed the disease.

Hetrick’s mother and her mother’s two siblings also have Alzheimer’s. The younger women plan to participate in any prevention studies for which they’re eligible.

The registry is part of a worldwide effort to tackle a disease that may impact 7.7 million nationwide by 2030.

Research released this month suggests there may be changes in the brain more than two decades before the first signs of Alzheimer’s surface. A study underway between the National Institutes of Health, BAI, the University of Antioquia in Colombia and Genentech is focused on cognitively healthy participants expected to get Alzheimer’s because of family history.

The group is studying 300 Colombians from an extended family who share a rare genetic mutation that usually brings on Alzheimer’s around age 45 and also will involve participants from the United States.

Two Alzheimer’s factoids:

  1. Recent research conducted by Edge Research of 1,024 adults ages 18-75 shows nearly half of American adults have a personal connection to Alzheimer’s
  2. 7 out of 10 worry they or someone they love will have memory loss or Alzheimer’s

Would you consider joining a registry for Alzheimer’s or another disease with a genetic component? What is your biggest worry about getting Alzheimer’s?

Follow Sally Abrahms at www.sallyabrahms.com and on Twitter. Take a look at her November AARP Bulletin story on the emotional side of caregiving.

Gag Reflex

Good news. I discovered something new about myself. Poop makes me gag.

I’m OK with cat poop and I’ve never really experienced baby poop—although, I imagine that mothers have some built-in mechanism to prevent them from vomiting all over their off-spring—but my mother’s poop makes me gag.

In the last month or so, I’ve dealt with my mom pooping her pants on more than one occasion. It’s messy. Poop just gets everywhere. It smells. Seeing it caked on her underwear makes me want to run. Gag. Swallow. I hate it. Of course, I can’t. I try to help her get clean, passing along wet paper towels. Unrolling more toilet paper. She hands me back her dirty underwear and used paper towels. Gag. Swallow. She needs more paper towels. Gag. How did poop get on the wall? Gag. Swallow. She’s mostly cleaned up. I hope it didn’t get on your sleeve. That’ll have to do until we get home or I get you diapers or something. Gag. Good. You don’t smell too bad.

Oh, Shit. My car seat smells like poop.

FACT. Human poop is really hard to clean up once it soaks through.

My mom has another nasty poop-related habit. She insists on wiping with a bath towel when she’s home. This would be fine if she could flush it. Instead, she hangs the poop covered towel back on the towel rank. Gag. Swallow. I’ve tried to show her how to use toilet paper. She’s not that into it. Gag. Swallow. When she hangs her poop covered towel back on the rack, I have to wait until she’s finished to toss it in the wash. My dad does the same. Coming in after to throw the towel away or in the wash. Gag. Gag. Gag. I remember the first time I witnessed the towel in action. My dad and I were sitting on the bed talking about it. He looked tragically defeated.

Like a soldier being told that they can’t come home.

 

Flickr pic by Scott MacLeod Liddle

Ramblings of a Demented Daughter… Floating Thoughts

I don’t know if I’m a good daughter…. My two cousins and aunt (mom’s sister and her two nephews)  blasted me a few months ago because of the name of the blog… My DEMENTED Mom. The word demented when translated into Spanish is apparently a not very kind word. I can’t say much about that. I didn’t know it was a wretched word in Spanish.

Alas, my mother tongue is English, the blog is in English and according to Merriam-Webster, DEMENTED has two meanings:

1. mad, insane
2. suffering from or exhibiting cognitive dementia

My mother fits both definitions quite nicely. The assault on my use of the word was so incredibly hurtful. They attacked me, the blog and from my point of view, my role as her daughter. I felt like such a horrible person, a rancid daughter, clumsy, baroquely grotesque, wretched and positively cheap……………..I knew it was a strong word……. but the name of my blog was never meant to disparage my mom or her memory………. she is demented. She is sometimes mad. She does suffer from cognitive dementia.

I love my mom.

I miss my mom.

This morning I woke up wishing that I had started wearing a purse when I was younger—when she told me too. Silly, random pre-dawn, pre-caffeinated thought. She used to tell me that I should wear a purse. That a girl my age should wear purse. I hated purses then (love ’em now), but I wish I just did what she wanted me to do. It would have made her happy.

I no longer have any relationship with these individuals—there’s no point. That and I’m stubborn but mostly I don’t think there is a reason to resume relations with people who just don’t get it. Who never will. I don’t know if I’m sad about that…… maybe more disappointed…………. but for me, family goes beyond blood lines. Natalie.

Cheryl.

Lindsay.

Petra.

And of course, my Jon.

New topic.

I talked to Sandra Gonzalez at the Alzheimer’s Associate Desert Southwest Chapter. My mom hates baths. Sandra was sharing some tips for making bath time a little easier…. Play soothing music. Prepare her bath before she gets near the bathroom (apparently the noise may be amplified for those suffering from dementia). My mom screams. She yells, PORQUE ME PONES? PORQUE ME PONES?

That’s dementia for, WHY ARE YOU DOING THIS TO ME? YOU KNOW I HATE WATER. PUT MY CLOTHES BACK ON. I SWEAR TO GOD IF YOU PUT ME IN THE WATER I’M GOING TO SCREAM. YOU’RE REALLY PISSING ME OFF.

We also talked about communication…………. communicating with my mom, understanding her and talking to her in her own language. My mom has less than a handful of phrases that she uses and repeats over and over….. I use the same phrases to talk to her.

Oddly, she understands me. No idea what she thinks I’m saying, but she responds….. in her own demented language. I am in her world. Every time I visit my mom, I step into her world, I engage her……….. I “allow” her to shop lift………. I listen to her. I paint her nails hot pink. I clip her finger and toe nails. I dress her sometimes—something I actually like to do……. granted she ended up with a pair of Converse One Stars, but she likes them and I own the same pair (I like it when we match…………… it’s my thing).

 

Tomorrow, March 25, is my mom’s birthday. She’ll be 73.

 

>>Flickr pic from Mariel B

Oops

My mom pooped her pants.

Actually, it was a tiny accident. She can control her bowels (and her bladder too)…………….. you just have to get her to a bathroom when she has to go—cause let’s face it: When you gots to go, you gots to go. I tried. There was a line. I rushed her to another bathroom. I failed. It was a smudge. A large-ish smudge.

Although, this wasn’t a huge mess/misstep/or even a big deal……… this accident got me thinking (well, I’ve thought about it, but I try to repress it)…………. what will happen when accidents become every day occurrences?

What will happen when she can’t wipe herself?

Wiping is such a funny, mostly strange rite of passage-slash-human experience… when you’re able to wipe on your own, you’re a big kid. When you can no longer perform this act solo, you’re an invalid.

As the child of a parent who will eventually have to be wiped by another human being, I really don’t know what to make of it. I mean, I’m writing about it, but I don’t have any profound words to share nor have I made a startling realization about life and its meaning, etc, etc, etc, blah, blah, blah…….

I guess all I can say is that at that point, we’ll likely have to place my mom in a facility, and that scares the shit out of me. We’ve been down that road……. it was brutal, emotional, messy and grotesque. I sincerely hope to never have to relive that horrendous experience ever again…………………… I hope she never has to relive that again.

Right now, my mom knows where HOME is.

So while the woman may not know my name, her husband’s name, or what year it is, and she may use the phrase, “Despierta America” to describe everything from the clouds in the sky to her most favorite food in the world (french fries), my mother knows exactly where her secret (not really) stash of apple juice is hidden—on her bathroom counter (don’t ask) in her house.

 

>>Flickr pic by funkomavintage

Do You Love Me? Will You Wipe My Bum?

Will you wipe my ass?

You know, dealing with a demented parent has given me a chance to reflect on the nature of relationships. I tend to pay much closer attention to the dynamics of a relationship these days: Some people I know have wonderfully nurturing relationships; others, ahem, are not so enviable. Naturally, most of us want to find that special someone, a person who will stick with us through the good times and bad, but I know a few people who really just want another warm “body” in their lives and are willing to sacrifice their own needs and desires simply to keep that person around.

But here’s the problem with getting hitched for all the wrong reasons, or at least this is what I think about—often: if the poo hits the fan, your mate may not want to play caregiver. And even if he or she does stick around through sickness, he or she may not truly be there for you in the way YOU need them.

So, here is what I propose: If you are indeed serious about walking down that aisle, this is the question you must ask yourself and your mate.

**Warning, you may not like the visual picture I am about to present.

“In the event of an illness such as cancer or dementia, and I become incapacitate, will you wipe my ass?”

This is not crude or crass. In fact, this question has already been tested in the field: A girlfriend of mine was counseling a pal about her troubled relationship and actually asked her my question. Needless to say, it gave her something to think about. And the answer to this question is tremendously telling. If you partner looks at you in complete and utter horror and says, “absolutely not,” May I suggest—and mind you, I am no relationship expert—that you reconsider saying “I do.” And if your mate says something like, “don’t worry, we’ll have a nurse take care of that.” Think again. Because unless something changes, *universal health care, universal health care,* such luxuries, like having someone wipe your bum might not be an option.

Think on these things.