With a Little Help from My Friends

By Bud Focht

Hi, my name is Bud and like Billy Shears, I get by with a little help from my friends.

Billy Shears, a member of Sgt. Pepper’s Lonely Hearts Club Band and the alter ego of Beatle drummer Ringo Starr, is asked questions about the meaning of friendship and true love in the second song on one of the most famous rock albums of all time (the first rock album to ever win a Grammy for Album of the Year in 1968). 

Shears answers the questions put to him by saying that he “gets by with a little help from his friends.”

That is something that I have finally learned how to do.

It has been a year now since I have become a caregiver, after my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, and I am finally allowing others to help me with this labor of love.

At first I felt that, since Terry is my wife, my partner, that this responsibility rests on my shoulders and my shoulders alone. I was not about to out-source this job, this responsibility.

In my early research of this disease, along with the advice I was given by the neurologists and neuropsychologists, I was informed how much of a burden it could be for a caregiver.  But most of the reading I was doing was talking about people caring for a parent or a grandparent.  And I can see how that could become somewhat of a burden.

But the love between spouses, between partners, between soulmates, is so different, so unconditional, that I felt it would never be a burden to me. And I still feel that way. I never wanted to push any of my responsibilities onto my children, certainly not onto my friends.

But as Terry’s condition has worsened, and with my busy work schedule, it became more and more difficult for me to do it all. I needed help. Even though I wanted to more than anything, I just couldn’t be there for Terry 24 hours a day. 

In the beginning I tried, but in the beginning it was not a 24 hour job. Terry could still perform certain tasks, even though they were a bit tougher for her. She could still drive to local places. She could still prepare her own meals. She could still work. She could still do housework. She could still find ways to keep herself busy while I was at work or on a road trip.

That is no longer the case.

Every day I thank the Good Lord for my three terrific children and for the best friend that anyone could possibly have.

My kids are all grown, out of the house and have their own lives to lead. Asking them to travel 30 to 60 minutes to come home and help me was something I have fought all along. I wanted them to come home when they wanted to come home, not when I asked them to come home.

And they’ve been great. They come home many weekends to spend time with their mother, regardless if I am there or not. They don’t come home because I need them to come home, they come home because they truly enjoy being with their mother.

But with Terry having more and more difficulty performing the tasks that used to be so easy for her, I need the kids to help give her rides to places when I am not around. To fix her supper when I am working. To give Terry her medicine when I am out of town.

The other night Terry had a 7pm appointment. I could not get home from work until 7:30 that night, and without me asking, my oldest and dearest friend Jack volunteered to pick Terry up and take her. Terry was extremely grateful, as was I.

Up until that point Jack’s main role in this drama has been to try to keep me sane, to give me advice and to give me his undying support.

You can’t make old friends.

Other old friends, from my youth, my college days in Miami and from my years living in Rhode Island, have reached out to me with such great support. Old friends who had relatives, parents or parents-in-law, who have had this terrible disease. They have seen it and they have an appreciation for what we are going through.

Terry also has friends who are also helping us. Since Terry only works one day and about five hours a week, she is often home alone while I am working. Terry’s friends from her Bible Study have begun picking her up a few times a week and taking her out on Bible Studies.

When I come home from work I can honestly tell the difference in Terry on days that she has been out. The interaction is so good for her.

A lot of people feel sorry for me, feel sorry for Terry, for the shitty hand that we’ve been dealt.  But, honestly, I feel lucky.   Of course, not because of Terry’s EOAD, but because of the friends and family that I have supporting us during this chapter of our lives.

Obviously, it sucks. But the outpouring of love and help we have received has been nothing less than overwhelming.

In my early research it was the caregiving that was supposed to be overwhelming.

As Terry’s condition continues to deteriorate, I am sure I will be needing more and more help. Especially next fall when, after a relaxing and enjoyable summer, my work schedule again picks up.

I will try to keep the words of Billy Shears in mind. And three years before anyone ever heard of Sgt. Pepper, the Lads from Liverpool made a movie, a cross between the Marx Brothers “Duck Soup” and a James Bond movie, entitled Help!

In the title song, John Lennon wrote:

When I was younger, so much younger than today

I never needed anybody’s help in any way

But now these days are gone I’m not so self-assured

Now I find I’ve changed my mind and opened up the doors.

I have opened up the doors, to my family and friends, for their help in my caregiving. At first I was reluctant, but those days are gone. Now, whatever I can do to help Terry, to help make her life easier and more pleasant, I am doing. If that means relying on others, so be it.

Until next time, remember that in The End, the love you take is equal to the love you make. Create love and you will get love in return.

Bud

Helicopter Husband

By Bud Focht

Hi, my name is Bud and I think I may be a Helicopter Husband.

You have probably heard the expression Helicopter Parent, describing a parent who pays extremely way too close attention to their kids’ experiences and problems, especially when the kids are older, old enough to handle things themselves.

Helicopter, as in they hover overhead.

Ever since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, I have done more and more for her, including making 90 percent of her decisions. I am always hovering overhead.

Part of that is because she can no longer do many things that she used to. Terry has not driven a car since fall and I doubt will ever again. She could probably operate a vehicle if she had to, but she no longer knows how to get anywhere, and she is no longer capable of figuring out how to get somewhere.

Terry can no longer cook. Following directions from a cookbook has become a major struggle and she doesn’t remember her own old recipes. The ability to use the stove, oven and microwave unsupervised no longer exists as well.

She is able to do the laundry but sometimes not without a few hiccups. Terry can still iron, thank the Good Lord, because that is the only chore I have not done. I changed as many diapers and washed as many dishes over the years as Terry, but ironing for some reason was never something I could master, or try to master, or even try to do. I might have ironed twice in my life.

Speaking of dishes, Terry can still wash them, but sometimes after she dries them she doesn’t know or remember where to put away certain pans or glasses.

Terry has never taken her own Alzheimer’s medicines in the year she has been on them. I decided on Day One that she was not going to have to try to remember if she took them or not. I give them to her every morning. The few times I was out of town my daughter gave them to Terry and because of my hovering my daughter would sarcastically text me a picture of Terry taking her meds.

When Terry sets up meetings or appointments with her friends and her Bible Study partners, I have to be involved, so I can write them down for Terry, put them on the calendar for her. Remember them for her.

Members of Terry’s Bible Study group have been great. A few of them pick Terry up on different mornings and take her to a Bible Study. The interaction and just getting out of the house is great for her.

What was it that Johnny 5 said back in the 1980s in Short Circuit?  “Input!”

When I am away from Terry I fear that she cannot be left alone for any length of time. I know she doesn’t like to be alone. I always give her lists of things to do, to keep her busy. And she always has music playing. Input.

I began wondering if maybe I was aiding her decline by doing so much for her.  Maybe if I made her try to do more things herself then she would be able to do more things on her own, when I am not home, for a longer period of time.

What is that expression; Give a man a fish, he eats for a day. Teach a man to fish; he’s off every weekend with his buddies drunk on a boat. 

Or something like that.

The big difference is, with Terry, I’m not really teaching her anything, nothing that she doesn’t already know, or used to know. At the very most I would be trying to help her muscle memory kick in.  Things that she has done a thousand times, but is now forgetting how to do. Maybe if I make her do them, or guide her through doing it, rather than me doing it for her, it might help?

For a while, anyway.

That’s the worst part. Things are only going to get worse. Last year the doctors told us it was important to get on the meds as soon as possible because it would give us an extra year or two. A ‘year or two’ of what, I didn’t ask. I was afraid to. But I got the idea.

So I think that is why I want to do so much for Terry. Sure, some things she can’t do. But there are some things she could do if she had to, but she would probably struggle.

Well, I don’t want her to struggle. Not now. Not yet. There is going to be a shit load of struggle in the years to come, so if I can prolong that as much as possible, I will. Even if that means I am a Helicopter Husband.

I remember about a year ago when Terry was crying. I tried to console her and she said “It is just so hard.” Talking about life in general.

I don’t think I’ve seen Terry cry since then. I would hope that my hovering has helped prevent it.

Terry said it was just so hard.

Well, I don’t want it to be so hard for Terry. So the least little things I can do for her, fix her lunch, pour her a glass of green tea, anything, I’m doing it.

Except ironing. As Meatloaf said: “I will do anything for love, but I won’t do that.”

When we were told it was Bucket List time last summer Terry and I went to Kauai, Hawaii. While there we took a helicopter ride over the beautiful island and it was one of the coolest things we ever did. Brad was the name of our pilot and was extremely entertaining and knowledgeable of the island.

The rest of the week every time we saw one of those tourist helicopters hovering overhead we would always say “Hi Brad” to it.

In the months to follow there was a running joke every time we saw a helicopter, no matter what state we were in, I would ask Terry “do you think that was Brad?” and she would remember the great time we had last summer.

Showing Terry a great time and helping her remember great times. That is my priority. I admit, I pay extremely way too close attention to Terry’s experiences and problems. If that makes me a Helicopter Husband, I think I am okay with that.

Until next time, Brad and I will probably still be hovering,

Bud

Don’t Stop the Music

By Bud Focht

Hi, my name is Bud and like Kiki Dee, I’ve got the music in me.

Like most kids growing up in the 1960s and ‘70s, I have always been heavily into music.  Listening to it, not playing it.  Hearing the Sgt. Pepper album on head phones for the first time was a profound moment in my life.

I grew up on the three B’s; the Beatles, Bob Dylan, and the Bee Gees (BEFORE they went disco, songs like Massachusetts, To Love Somebody). And I am a big enough man to admit that yes, when I was 10 years old I was into the made-for-television band, the Monkees. But in my defense, that group of actors pretending to be a band had two excellent song writers (Tommy Boyce and Bobby Hart) who came up with some very good tunes.

But the closest I ever got to listening to Country Western music when I was younger was listening to John Denver. But I considered that closer to folk music.

Country Western, to me, was Roy Rogers singing “Happy Trails” or Dolly Parton, although I did like the Man in Black, Johnny Cash.

But Country Western had too much Twang to it. To me it was Hee Haw.

My son had the most diverse iPod in the world, with songs from the 60’s and 70’s, along with current songs from country, rap, pop, rock and reggae. A few years ago he turned my wife Terry on to country music, taking her to a George Strait concert.

Ever since then we’ve listened to a lot of country music in our house and I have to admit it has grown on me. The last concert I went to was the Zac Brown band.

But the biggest impact music eventually has had on me is the fact that it became a common denominator for me and Terry.

One of us will yell out “Kenny Chesney” every time one of his songs comes on the radio and it has become a running joke.

Seeing Terry respond like she is on a game show, trying to shout out the answer as quickly as possible, is funny to both of us.

Henry David Thoreau once said “Music does bring people together. It allows us to experience the same emotions. People everywhere are the same in heart and spirit.”

In my modest studies of the human brain and memory, ever since Terry was diagnosed with Early Onset Alzheimer’s Disease, I have read about people who can no longer speak in full sentences but can sing an entire song. People with advanced memory loss who don’t know what town they are in but can sit down and play a song on the piano.

It turns out that music stimulates the mind, and that the brain processes music in multiple areas, some areas that are not damaged by Alzheimer’s.

Music can be a great medium for reminiscing with people with memory loss. Many memories can come from melodies. Many times Terry cannot recall details from certain events in the past but certain songs and types of music can stimulate her brain to recall some of the emotions and memories of days past.

So now Terry’s day always has a soundtrack to it when she is home. The radio or CD player is always on when she is home alone, and often when I am there as well. It can bring her moments of enjoyment, familiarity and well-being.  It can affect her mood, although she is almost always upbeat.

Albert Camus, a French Nobel Prize winning author once said “A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words.”

That goes for caregivers as well. At least for me.

Although Terry is quiet, even more quiet than she used to be, she can still communicate. There will be a time in the not so distant future where that will no longer be the case. But my reading tells me that music can be a powerful bridge helping caregivers like myself to reach their loved ones when Terry is no longer able to communicate with words.

I’ve read how Alzheimer’s can create strangers out of loved ones. I refuse to ever let that happen.  I have read that studies have been made where Alzheimer’s patients who listened to music three hours a week over a 10-month period actually had improved cognitive test scores.

I’m not asking for miracles. I just want Terry to be happy and to have as many good memories as possible. And to be able to retrieve those memories, even without the help of her hindered hippocampus.

Nostalgic memories involve the hippocampus, but listening to music involves the auditory pathways, auditory cortex and sensory association cortex.

Slowly, inevitably, Alzheimer’s robs people of profound memories, like the names and faces of loved ones. There are those who believe that using music we can mitigate the effects of Alzheimer’s.

Somebody once said “Words make you think a thought. Music makes you feel a feeling. A song makes you feel a thought.”

I’m not sure what I feel when I listen to music, but I know I feel great when Terry hears a familiar song and has a positive memory associated with it.

These days I am trying to create more positive memories associated with music, like playing the Kenny Chesney game at home or in the car with Terry.

It turns out that, like Kiki Dee, Terry has the music in her too. 

Like Bob Marley said, “One good thing about music, when it hits you, you feel no pain.”

Until next time, keep the music playing and feel no pain.

Bud