Reaching out

I was talking to my good friend Stefano the other day, telling him that I’d been reaching out to people on Facebook more and that I had “friend-ed” someone I knew through him. He told me that he had just told this same friend about my blog because his friend was going through a similar situation with his mother and suggested that we talk to one another.

I had no idea of his situation when I “friend-ed” him, only remembering that he’s an interesting person that I met in New York but was living in Europe that I hadn’t been in touch with for awhile. Well, I don’t believe in coincidences and wasn’t surprised when Lester, the friend and I were on the phone soon after talking about Alzheimer’s.

He told me that a little over a week ago he had flown to New York to visit his mom in Queens after being in Los Angeles for work. He said that he was surprised by how different his mom was, that he knew something was wrong with her and that something had to be done immediately to get her help. I listened to his story, verbally nodding in agreement and acknowledgement that I knew exactly what he was talking about as he related stories of her erratic behavior.

His situation is different from mine (of course, no two experiences with dementia are exactly alike). For one his father is still alive, but elderly himself so isn’t able to cope (mine is dead) and Lester’s brother lives on the West coast (and mine is only an hour away in Virginia) so he’s more or less doing all of this by himself but the end result is the same-he’s the adult child of a parent that now needs his help to guide her through the end of life as she guided him at the beginning.

I listened as he told about her conspiracy theories, paranoia, forgetfulness, confusion and his very real fear that she was going to get in a car accident because she was still driving herself to school where she still teaches. He said that she was very clever about how she covered up her shortcomings and had developed shrewd methods to compensate for her mental deterioration.

I could hear in his voice how tired and sad he was and there was a moment as we talked when I could hear the realization hit that his mother as he knew her may be gone forever.
I told him to think of her in a different light, to (take some time and) mourn the loss of the mother he knew but to remembered to hold onto the love (which is still there and always will be) and to focus on developing a new relationship and new bonds with her, as she will be ever changing because of the disease.

From all that he told me and all that he’d learned (and learned to do) in just a week’s time I told him that he’d done a remarkable job considering. I shared bits of my experience where it made sense but tried to be sensitive and remind myself that this wasn’t about me and my experience-this was about listening and hopefully helping someone who was just joining the “brotherhood”.

As we talked I made a few suggestions; I learned in AA years ago never to “tell” someone what to do, the normal reaction from most adults (and kids, too) is to put up a wall and become defensive when being “told” what to do so whatever you’re saying never gets a chance to be absorbed, processed or possibly acted upon.

So I “suggested” that he not argue with his mom and that right now “being 100% honest with her” (which was the basis of the relationship that he had with her before all this happened) wasn’t as important as getting her to the lab for an MRI and an appointment with a neurologist for a complete evaluation to determine what her condition is and at what stage. I told him that I’m very much of the “ends justifies the means” school and to lie to her if he had to achieve his goal which is to help her.

I told him about (an organization he said he didn’t know existed) and how helpful they’d been for me with everything from resources to support groups. I told him about the legal ramifications of what he was about to undertake and what he might need; power of attorney, medical directives, estate planning, etc as well as thinking about long term care facilities and how to plan for that. I could imagine that his head was about to explode form so much information coming at him all at once. He said that it was more than he had anticipated but that he was grateful.

The best piece of advice I gave him was one that was given to me early on by several people-that as a “caregiver” to make sure that he takes to take care of himself.

I didn’t really know what that meant in the beginning, so focused was I on my mom and her welfare that I wasn’t really doing the best job of taking care of myself, so I don’t think I was best prepared for the “marathon” that this process of care is instead of the ‘sprint” that I was my initial approach.

Truth be told, l think that I’m “just’ beginning to take care of myself (a year into this process) which definitely impacts how I can care for my mom. But, it takes what it takes and as Maya Angelou says, “When you know better, you do better”.

I told Lester that he wasn’t alone and that he could add me to list of people to call for support or if he ever just wanted to vent and have someone to listen (and not give advice, judgment or an opinion) I was here for him.

I got off the phone realizing that in talking to someone who was new to all this that I knew more than I thought I did. I was sorry for his situation but happy (for lack of a better word) that I could reach out and give what so many have given to me by way of support, empathy and information.


Happy Father’s Day

“You know, you repeat yourself a lot.” I said, in a matter of fact voice (at least I hope it sounded non-judgmental or bitchy). Miss Cathy had just finished telling me something that she’d told me several times already; in fact I’d already heard the “exact” same story twice that day. I just thought she should know-thinking maybe it was something she didn’t realize she was doing.

“Oh really?” she said, seemingly unfazed. “Did I tell you that I called Adele to wish her a Happy Birthday?”

“No, you didn’t tell me that.” I answered.

“Well good, I’ll try not to repeat that one.” She said and we both laughed.

Cute, right…well, I thought so, and that was pretty much the way it’s been between us since I got back from my little “holiday” last weekend visiting my brother, Tony and his family. I was just gone one night but it gave both of us some time apart to re-charge. While I was away I checked in on Miss Cathy everyday and she was seemed to be having a great time.

I was feeling so “great” about everything that I spontaneously asked Miss Cathy if she wanted to go to the arts and crafts store yesterday to buy some artificial flowers for a vase that Ron (one of her many other “sons”) had given her for Mother’s Day. She’d been talking (a lot) about wanting me to select flowers for the vase because she liked the way I decorated the apartment and “put things together”. Since it was Father’s Day I thought there was a bit of symmetry to the outing and was happy that she accepted the invitation.

She seemed happy enough to be going out, we hadn’t been out together for anything other than doctor‘s appointments so it was nice to be doing something purely social. Since the arts and crafts store has a reputation for discounting things I was hoping to combine two of my favorite hobbies-shopping and bargain hunting.

No sooner had we left the complex and I turned the car in a direction she wasn’t expecting when she said, “Why are you going this way?”

“I’m going to the Beltway” I said.

“The Beltway?!” she exclaimed as if I’d suggested we walk. “Why are you going on the Beltway? All you have to do is get on 193 and take it all the way down. You’re going the long way there but it’s your gas.”

“Well, the Beltway is the way that I know so that’s what I’m going to do.” I said, not quite regretting my suggestion of the outing but getting a feeling I might. The last time she had me deviate from my mapquest printout we were leaving the “Grand opening” of a supermarket (at 7 am on a Wednesday no less), forty minutes into the turn she insisted I make she confessed that she didn’t know where we were going so a fifteen minute drive home took us an hour and a half because I listened to her. I made a vow to myself not to do that again and I was going to keep it.

The drive was quiet, more from the classical station being on and the windows rolled down so that we could take advantage of the cool late morning breeze than anything else (or so I thought).

I did miss one turn but it only added a few blocks to our final destination. For some reason, having Miss Cathy in the car makes me nervous, it might have something to do with the fact that she sits in the car with a death grip on the door handle and her head is constantly whipping looking for an oncoming collision. We’d already had it out about her ‘back seat driving’ so she sat silently (for the most part) but her body language was screaming directions, corrections and suggestions all the way from point A to point B.

Parked and ready to have at the clearance table I spied sitting in the front of the store I was hurriedly putting the handicapped tag over the rearview mirror when I heard, “when we go back just turn right at the light and go all the way down, I’m not going back on the Beltway.” “Makes no sense driving so fast, with all those cars.”

“Where’s that coming from?” I thought to myself but I said, “Well, I’m not going back that way, sorry.”

“See, that’s your problem, you don’t listen.” She said after she finally managed to lift herself out of the car and was toddling toward the entrance. “You just don’t listen,” she repeated,” you have to do everything your way.”

“I didn’t ask for your opinion,” I said to her back,” Jeez, I though I was doing something nice by bringing you out here.”

“I know you’re sick of me, “she shouted, startlingly me by this response, “I know you think I’m a nuisance and you don’t want to be bothered with me, I’ve known that for awhile now.” ‘Well, I’ll get my own damn car and you won’t have to worry about taking me anywhere, I’ll take my own damn self.”

“Well, I wasn’t sick of you till you started all of this,” I said retrieving the vase from the backseat” this day sure went to sh*t in a heartbeat”, suddenly tired of it all. Now that I was getting closer to the sale tables I saw that silk tulips were on sale for 60% off (usually an aphrodisiac for me) but they could have been free and I’d still want no part of them-that’s’ how turned off I was at that moment.

I wanted to be anywhere but there so I started to hand the vase to Miss Cathy and said, “Here you go, knock yourself out, I’m going to be in the car.”

She looked at the vase without taking it and said, “take me back home.”

Since things had been going so well and we’d been getting along so well I was surprised (to say the least) by her outburst. I’m sure it was a combination of her condition, what she perceived as my “speeding” and her inability to control the situation (which makes her anxious and irritable). Still, knowing all of that and remembering not to take her rants personally, I gotta say, it still hurt my feelings.

“Fine by me.” I thought, throwing the vase and what was left of my good mood back into the car.

Happy Father’s Day!

Folding chairs

Last Friday morning I walked into the kitchen for my usual coffee before my brother and I were headed out for an appointment with a lawyer to go over Miss Cathy’s estate. Tony had come over the night before after work to surprise mom with the visit. I knew she was very happy to have “her boys” all to herself and would be in the kitchen whipping up a fattening, artery clogging breakfast as only a mother could.

So, I wasn’t surprised when I saw Miss Cathy standing over the sink but something wasn’t quite right. It only took me a second to know by her less than usual “peppy” response to my salutation and the way she was slumped over that something was wrong. I went over to her, looked at her face and saw that she looked confused and disoriented.

Perspiring heavily, it looked like she was gripping the counter for dear life so I told her I was going to put the folding chair behind her so that she could sit down. I didn’t know what was going on with her but I knew that it was imperative to sit her down before she fell down. She wasn’t very communicative and her movements were very slow, as if she were trying to show me that she understood what I was saying but her body just wasn’t responding the way she wanted.

She didn’t seem able to move much at all; she just seemed to hang on. Seeing that she wasn’t making much progress on her own I held under her armpits and helped guide her down to the chair as gently as possible, talking to her the entire time, telling her what I was doing and how far she had to go before she was seated, reminding her not to “plop” down in the chair which is her habit.

Once she was seated I was able to look at her more closely and ask her a few questions to determine whether she might have been having a heart attack or stroke. It didn’t appear that she was so I got her a glass of water and wiped her brow and neck. Once I got her to sit down she couldn’t seem to calm down, she squirmed with what little strength she had until finally I was able to quiet her. She then told me that she thought she as going to throw up.

I reached for the nearest thing I could (which was an empty planter) and gave that to her while I went to her bedroom where she told me she had a supply of bags for vomiting. When I got back she had not thrown up yet but she’d dropped the planter, unable to control her fingers. She retched more than she threw up but there was some fluid and it seemed to help her to expel it.

I was able to keep her calm enough to sit for a few more minutes before walking her to her bedroom so that she could lie down. In her bedroom I got her to sit quietly as I debated with myself whether or not to call her doctor but in the space of those moments I took deciding she seemed to get better, I could actually see that the confusion was leaving her face and her movements became more fluid.

We took her blood count and it elevated (222 and her blood sugar is usually in the 140 –to 150 range). By the time we made the first “stick” she was talking in her normal voice and insisting that she wanted to go back in the kitchen to make breakfast. We got her cleaned up and I made the decision not to call the doctor but to tell him abut this episode when we see him next (which will be soon). I watched her as she walked (she insisted that she could walk un-aided) back in the kitchen and I sat with her as she prepared breakfast for my brother and me.

I reminded her that if she had been alone this was one of those occasions when she should have pressed her “medical alert” button and she agreed. But watching her “in the moment” it concerns me now that I don’t know that she would have had the presence of mind to do that. I know for a fact that if I hadn’t come into the kitchen she wouldn’t have had the wherewithal to pull over the chair that was less that a foot away for her to sit herself down.

She may have been able to hold onto the counter until whatever it was, low blood sugar, excitement about my brother being here or just a wave of nausea passed, and then do whatever was necessary to keep herself safe but I don’t think that would have been the case. She very well could have fallen and we would (potentially) have a repeat of the episode that started this entire journey in January of last year when she fell on the bathroom floor and wasn’t discovered for three days.

I know that the slightest interruption (good or bad) in her routine can cause a change in how she acts or responds, from something as very subtle as her demeanor changing to something like what happened on Friday. I don’t know if that was the case or not, that’s something I’ll talk to the doctor about.

After all the bickering, boredom and cost to my personal life its moments like last Friday that remind me why I’m here and I’m grateful that I can be. Like my friend William says, who takes care of (not only) his mother but his father as well, “It’s an honor to be able to spend the time with them and to do whatever I can to make there lives more comfortable after all they’ve done for me.”

Give me my flowers as I live so I can smell them

I took Miss Cathy to another funeral this morning. They seem to be one of the few things she gets dressed and leaves the apartment for these days. Hey, I’m just glad she’s getting out and “getting some air on her” as she used to say to my brother and me when we were little and she wanted us out of the house (and out of her hair).

It’s a fact of life that as you get old-old people around you start to die. Years ago, I remember asking my Pop about death and dying after so many of his friends crossed over. There was a period of time when it seemed that almost every time I called home he (or they) were going to a funeral. At the time this phenomenon was specific to Pop because he was considerably older than mom so they had friends almost a generation apart.

As a former New Yorker, where going to a shrink is as common as getting your bagel with a “smear”, I was prone to “navel gazing “ and introspection after my time on the couch so I asked him how he “felt” about his peer group passing on. He looked at me as if I wasn’t as smart as he’d given me credit for and said, “Well, how do you think I feel?” “ After your last friend dies all you’re doing is waiting for your turn.”

Now I’m wondering if Miss Cathy is thinking the same thing because the mood has been a little funereal around here. It doesn’t help that the sermon she was listening to yesterday on Sunday morning television was all about “Love, peace and passing on”.

She doesn’t get maudlin and she’s not a very sentimental person but every now and then, she gets reflective-especially around occasions like the one today.

So, yesterday, I was surprised when she stopped me as I walked through the living room, past the reverend and his sermon, on my way out to the balcony to enjoy the cool morning air. She said she wanted to tell me that she never forgot a trip I made in my car from Kansas City a few years ago when I drove nonstop and slept in my car for a few hours before getting here as soon as I could.

She said that it touched her heart that I would show my love for family by dropping everything and doing what I did. I told her it meant alot to me to hear her say that. I started to well up watching her get misty-eyed.

“I believe in letting people know what they mean to me while they’re around to hear it”, she said, “some people wait till it’s time to go to a funereal to let what they feel be known.” “I don’t believe in all that, that’s just a “show”.

Then she looked me in the eyes and said, “Give me my flowers as I live so I can smell them.”