Caregiving, Aging & Alzheimer's

Helping children to love those with memory disorders

As hard as it is for adults to deal with parents and grandparents with Alzheimer's or other forms of dementia, imagine how hard it is for children.  Some younger children may not be aware of the changes, and actually make good "playmates" for these elderly relatives.  But a child who is old enough to notice and miss the usual attention received, may wonder why grandma or grandpa no longer seems to care about them.

When my granddaughter was 3 or 4 years old, my father loved to watch her play, follow her at the playground, and "catch" her as she came off the slide.  She hadn't known him when he was different, and accepted him just as he was.

For older children who are dismayed by the changes in grandparents with memory disorders, a new book called Hugging Grandma by Zina Kramer offers a wonderful way to introduce this difficult topic.  Beginning by telling all the things she loves to do with her grandma before she is afflicted with Alzheimer's, the child narrator then expresses her sadness with the change:  "What's wrong with Grandma?  Doesn't she love me any more?"

With help from her mother, the little girl learns to give back to grandma the love and care she was given, by helping her feel useful and wanted.  The wonderful illustrations by Dave Messing help make this book a moving, gentle, and comforting story for children and adults alike. 

The book includes a note to parents and a list of suggestions for interacting with grandparents who have memory disorders.

Ambivalent Feelings when the Caregiver Gets a Break

As a stressed-out caregiver, I was thrilled to put my husband Adrian on a plane yesterday morning to visit his son.  Yet in the middle of the night, I woke up feeling anxious and guilty. 

"How could I be so happy about getting rid of him?" I thought.  "I must be a bad wife!"

The same ambivalent feelings used to appear when I was the caregiver for my father several years ago, and one of my siblings would take over the job for me.  These feelings were often expressed by me over-controlling how my siblings took care of Dad.

I had the same impulse with Adrian, and could have ruined his whole trip by giving his son a detailed list of things to remember.  But thankfully, I held back.  "Let the two of them work it out," I decided.

So when I was anxious and guilty in the middle of the night, I told myself I'd feel better in the morning, and I went back to sleep.

Lo and behold, I do feel better today!

Feeling Attacked and Assaulted: Caring for the Caregiver

Sometimes getting sick or hurt is a sign that as caregivers, we need to take better care of ourselves.

Saturday night I was playing doubles ping-pong, with Adrian as my partner.  At 82, with poor balance, he doesn't move well, and fails to get out of the way when it's his partner's turn to hit the ball.  We play "alternating," which means you have to take turns hitting the ball, no matter where it lands.  Ideally, you hit the ball and then back off so your partner can get the next one.

Well, I've played doubles with Adrian many times, and usually just lunge past him to get the ball no matter where it lands.  But Saturday I tripped over his foot and landed hard on the concrete floor of our basement, bracing with my left hand.  I now have a swollen wrist and hand, but I said at the time, "Thank god I didn't hit my head on the concrete wall," which was inches away.

Thinking my fall had been a freak accident, we continued to play.  And a few minutes later, I tripped over him again, this time smacking my head hard.  It really hurt, and then I felt nauseous and said I had to lie down.  When Adrian tried to help, I said, "Stay away from me." 

"Do you want some ice?" he asked.

"Yes," I said, as I lay face down on the bed.  So he brought me a dish of ice-cubes and some paper towels.

"We have a freezer full of ice packs," I snarled.  "Get me one of them."

Later, after daughter Blixy arrived and was helping me prepare dinner, she said we had done everything wrong.  "You're not supposed to lie down after a head injury.  And someone should have checked your pupils to make sure they weren't dilated, which is a sign of concussion."

"Here, feel the lump," I said. 

"I don't have to feel it.  I can see it."

Boy, do I love to feel sorry for myself.  I can't wear my watch on my left wrist now, because of the swelling.  I can't sleep on my back without feeling pain at the lump.  Poor me!

But what is worse is that I feel like I've been attacked and assaulted, as if Adrian were deliberately "trying to kill me."

Later we figured out that I most likely tripped over his feet because he was wearing his mud boots, which are thick rubber.  Instead of sliding past him, my foot probably caught a bit, and tumbling I went.  Another contributing factor is that I'll do anything to make a point in ping-pong. 

Sometimes an accident like this is a sign that, as caregivers, we need a rest.  I have been feeling overwhelmed lately by my own work, and dealing with Adrian's needs on top of that has been a struggle.  Hurting myself gives me permission to care for ME for a change.

I don't really believe Adrian tried to hurt me on purpose.  It's not his fault he can't move out of the way.  What I'm really angry at is that I didn't take better care of myself. 

Is it Alzheimer's, Dementia, or ordinary Aging?

Adrian always suspects he has Alzheimer's or Dementia, though he cannot remember the actual words and keeps asking me what they are.  When he's having a good day, I don't think he has either one because his sense of humor and analytic abilities are strong.

But too often he cannot actually have a conversation with me because he starts to say something and then can't remember what it was.  This happened last night.

"I figured out that I love you," he said.

"Good, I love you too."

"Don't you want to know how I figured it out?  If you don't, then you don't love me."

There's that sense of humor.  "Sure," I said, "how did you figure it out?"

But he was unable to tell me.  He had "lost" the thought again.  We tried for a while to regenerate the conversation, but to no avail.

I try to keep our conversations going by telling Adrian things rather than asking him questions he can't answer, but it gets lonely at times.  It is worse for him because he feels isolated socially.

It doesn't really matter what we call it:  aging, dementia or Alzheimer's.  He suffers nonetheless.

When caregivers help too much

Sometimes caregivers try to help too much.  I had just finished painting this morning and walked out of my studio to use the bathroom, when I saw Adrian trying to put short skis on in the mud room.  I immediately went over to help him, since he seemed totally confused about how they worked.

These skis strap onto your every-day boots, and are good for going through rough terrain in the woods.  I soon had Adrian strapped into both boots.  Then he stood up.

"How do they feel?" I asked.

"I have to try them," he said.

"What do you need?" I got his coat and helped him on with it.  I offered him two choices of walking sticks.  I offered to get a pair of our cross-country ski poles from the basement.

"I need to get back to work, though, so what do you want?"

"You're rushing me," he said.  "I wonder if I can get out the door and close it."

"Do you know how to get them off?"  I was worried that he'd fall and not know how to remove the skis.  "I guess I should have stayed out of it.  If you'd learned how to put them on yourself, you'd know how to get them off."

He finally made it out the door, and even remembered his cell phone so he can call me if he gets in trouble.  Next time I'll stay out of it unless I'm asked for help.

Better communication helps relieve caregiver stress

As caregivers, we think we need to be patient and loving at all times.  So we overlook things that bother us until we reach the boiling point.  And then we boil over.

At least, that's how I do it.  The other night Adrian shook out his quilt at 2 a.m., creating a puff of cold air in my face that woke me up.  I got furious and did it back to him (not that it mattered to him, since he was already awake).

Even after taking a sleeping pill, I could not go back to sleep.  He has to stop doing this to me, I thought.  I don't deserve this.

In my mind I tried and convicted Adrian, convinced that waking me up in the middle of the night was equivalent to abuse. 

I had never complained much before about the quilt shaking because I knew he wasn't doing it on purpose to wake me up.  And I knew he just didn't remember that I'd asked him not to do this.  So if it wasn't his fault, whose was it?

Well, we finally sat down and had a serious talk about the problem and Adrian agreed, of course, that I should be able to sleep without him waking me.  We came up with a couple possible solutions that would allow me to sleep undisturbed, and Adrian to have his quilt the way he likes it. 

The important lesson in this is to speak up about a problem, not wait until you boil over.

A Caregiver's Need to Rant

My caregiver's rant for the day:  I have had a bronchitis cough since the middle of November, and I can't seem to get rid of it.  So all I wanted to do today was take a little nap after lunch.  I told Adrian I was going in to take a nap after I put the laundry away.  I invited him to come with me and put his laundry away, too.

Well, he fiddled with his back-pack first, emptying it on the bed and going through everything in it.  Then, when I was ready to go to sleep, he started to put his clothes away.  I asked him nicely to leave them and do it later so I could sleep.

"Why?" he said.

"Because I can't sleep while you're doing it."

"It will only take a few minutes," he insisted. 

"Fuck," I said and walked out of the room.  I came into my studio and locked the door behind me.  I just wanted to cry.  No matter how much I do for him, he can't seem to change his schedule one iota for me. 

He is probably already sorry and wanting my forgiveness, but I don't care.  I don't feel well. 

Later . . .

So I was petty, impatient and bitchy.  I'm bipolar, give me a break.  Adrian hates it when I'm mad at him, and so do I.  We made up after I finally took my nap.

Moods of a Caregiver

I've noticed that the quality of my caregiving depends all too much on my own moods.  When I am feeling relaxed and OK with my world, I can be a patient, loving caregiver.  But when I am stressed or depressed, I tend to take it out on Adrian. 

The other night, just as I was trying to get to sleep, he complained about the bed (which is not even a year old):  "The mattress needs to be turned," he said.

"Not this kind of mattress.  But I rotate it every couple of weeks."

"I keep falling into an indentation in the middle of my side," he insisted.

Now, this wasn't the first time he had complained about the bed just as I was trying to fall asleep.  "Go sleep in the guest room then," I snapped.  "But don't talk to me about it now."

Timing is everything.  The next morning, I rotated the bed and washed the sheets.  I also showed him that this kind of mattress cannot be flipped over. 

Did we sleep any better the next night?  No, but at least he didn't complain about the bed.

Holidays and Caregiving

Sometimes the holidays make caregiving easier:  other relatives are around to help out; there is more activity going on to entertain the person you're caring for; and you take time out from work to relax.  I remember having family visit for my father's 94th birthday, and how much he enjoyed it. Normally he would only last a few hours, but he was alert all day, and especially enjoyed the poker game even though he lost. 

Other times, hosting at the holidays means more work, more stress, and less time and patience for the caregiver.  I'm afraid this year Adrian did not enjoy our Hanukkah celebration.  He hid out in his office much of the time, and was very quiet during the meal.  We had three children and seven adults, and continuous activity with Dance-Dance going on in the living room, ping-pong and darts in the basement, and food prep in the kitchen. 

When we have guests, I tend to focus on the guests, not on Adrian.  In fact, I often resent the fact that he is not helping me entertain.  And when my grandkids are here, I focus on them.  

My father always enjoyed having a lot of family around, playing cards and games.  We are a game-playing family.  But I'm afraid Adrian simply suffered the loss of my normal attention. When we finally went to bed last night, he said he was unhappy.  And I felt guilty.

My caregiving life gets busy again

Adrian came back from California late Wednesday night, and my caregiving life got busy again. 

I was glad to see him even though he kept me up late making a meal for him, and then not sleeping well (he was restless and on California time).  But last night he really gave me a scare.

We were watching a 30 Rock dvd when Adrian said, "I don't feel well."  I helped him stand up, and he gripped my arm to walk down the hall to the bedroom.

"I'm nauseous and seeing double," he said.  "Maybe I ate too much."

He had just eaten an apple after a big meal, but still, I worried that he might be having a stroke or the flu.  I got him settled into bed so he could rest, since that's what he wanted to do.

When I went back a half hour later, he said, "I see two of you, but that's nothing compared to the other things I'm seeing."

Now I was really worried, but I offered to make him some tea, and he managed to walk back to the kitchen.  It was then that I noticed a bottle of cough medicine Adrian had brought out earlier for me, since I still have my cough and cold.  I had declined taking any, but the bottle was still where he'd left it.

"Did you take any of this?" I asked.

"Yeah, I guess I did.  I'm not too clear right now."

I opened the bottle, which had been brand new, and saw that he had drunk almost the whole thing.

"That's why you sound and act stoned!" I said, throwing out the remainder of the syrup.

Later I gave him a lecture about taking as few medications as necessary, not drinking them down like soda.  His aging body had a very strong reaction to what was probably a mild over-the-counter cough syrup.  

"You don't have to lecture me," he said.  "I'm not that bad.  I was just nervous."

Well, that's reassuring!