Two Years Later…

It’s been two years since starting this blog – some things have changed, some not so much. I’ll mention a few things we’ve been doing, then comment on some of the changes.

In June, both J’s sons visited, overlapping by a day or so. It worked out well, was great to see them, and good, if poignant, for them to see how it’s going with their mother these days. It was a really low-key affair, which seems to be what’s called for now. We fixed meals together, went out to eat, took walks – that sort of thing.

In July we went to see a musical, Guys & Dolls,  at the music theater in town – it worked out well, but it takes some planning to pull off. Because it was spur of the moment, there were only tickets left for the upper balcony. But  we really can’t buy expensive tickets ahead of time because it all depends on health, energy and mood whether J will be up for something social like that. Since it’s a small theater, these seats are fine, but involve a really long walk down to the basement level, and back up, if you need to use the restroom. Aisle seats are essential, to allow for unexpected egress.

And then there is the performance itself – will J be able to hear? to follow it? will it be fun for her?, etc. All these points were fine – she enjoyed it and we might do this again next year. But the unknowing continues to be a big part of my life –  anything we engage in might or might not work out.

Okay, as for changes over the two years I’ve been writing – here goes.

This list from the Fisher Center for Alzheimer’s Research Foundation is found at http://www.alzinfo.org. Two years ago I would say we were dealing with upper stage 4, but now we are clearly living with stage 5:In this stage, deficits are of sufficient magnitude as to prevent catastrophe-free, independent community survival. The characteristic functional change in this stage is incipient deficits in basic activities of daily life. This is manifest in a decrement in the ability to choose proper clothing to wear for the weather conditions and/or for the daily circumstances (occasions). Some patients begin to wear the same clothing day after day unless reminded to change. The spouse or other caregiver begins to counsel regarding the choice of clothing.

 …Patients can no longer manage on their own in the community. If they are ostensibly alone in the community then there is generally someone who is assisting in providing adequate and proper food, as well as assuring that the rent and utilities are paid and the patient’s finances are taken care of. For those who are not properly watched and/or supervised, predatory strangers may become a problem. Very common reactions for persons at this stage who are not given adequate support are behavioral problems such as anger and suspiciousness.

Cognitively, persons at this stage frequently cannot recall such major events and aspects of their current lives as the name of the current president, the weather conditions of the day, or their correct current address. Characteristically, some of these important aspects of current life are recalled, but not others. Also, the information is loosely held, so, for example, the patient may recall their correct address on certain occasions, but not others.

Remote memory also suffers to the extent that persons may not recall the names of some of the schools which they attended for many years, and from which they graduated. Orientation may be compromised to the extent that the correct year may not be recalled. Calculation deficits are of such magnitude that an educated person has difficulty counting backward from 20 by 2s….”

Two years ago, frustration would cause J to have major emotional outbursts – these have subsided, maybe because the short-term memory is impaired enough to “erase” the source of the upset before very long. It’s almost like having the words you type into your journal dissolve about 5 minutes after you write them – so you can’t go back and get the memory of recent events, just long-ago ones, which didn’t dissolve (yet). Without immediate memory, events get lost – an hour or two after we get home from spending time with people, J will ask “Who were we with earlier?”, if she remembers the event at all.

J is more reliant on me, and seems more comfortable with that than two years ago. This is a godsend – not the reliance, but the ease with it. Like the quote mentions, the issue of appropriate clothing is beginning to be obvious – J has less sense of the outside weather, and less sense of the season, so will go out walking with a sweater on when it’s hot out, and will be surprised to find she soon  needs to take it off.  It might also be because of changes in her heat-sensitivity, which is also common in older years.

She lets me help with the clothing choices now, and tolerates guidance from me on how to do most anything around the house. But it is getting harder to structure the day enough! Unless there is a specific activity, she sits in the recliner and rests or watches out the window, or walks around the house in a slow, pacing amble. And to get her to do an activity requires careful instruction and sometimes preparation: can’t say, “Oh, go water the hanging plants” because she doesn’t know where the watering can is, doesn’t know how to check the plants for dryness, doesn’t know which plant is the fuchsia, etc. So, I need to check the plants beforehand, fill the watering can and then point to the plant that needs it – even then, she is likely to get a bit distracted by pulling a weed or two, and lose track of the project.

But, when J goes to the Respite Group all day (6 hours) on Wednesdays, she is awake and interacting the whole time. She is no longer complaining about going, so it looks like time to add the morning sessions to the two afternoons that she already attends, Monday and Friday. I have talked with the program director and this schedule is set to start the second week of September. This means she will have 3 days a week from 9:30-3:30 at the program, and that should help keep me fresh on the alternate days and the weekends, which is a great relief to contemplate.

Through writing, I’ve had contact with other bloggers, plus many family members  and friends, which has been immensely helpful. Useful suggestions, encouragement and understanding have been wonderful to hear. I’ve been able to have a much bigger world this way, to help against the isolation and discouragement that a chronic disease can bring to families. Thanks for accompanying me on this strange journey.


8 thoughts on “Two Years Later…

  1. Good to hear how well in hand you have J’s care. Of course the deterioration is a sadness, but I am glad you sound so strong and so supported. It is so important to know you/we are not alone in this.

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  2. I never expected to feel MORE comfortable, two years later, that’s for sure! But it is a function of a calmer J, for the most part, and also of me figuring some things out and developing a routine.
    I have very much appreciated your blog, and your response to mine, over these years, Alice. Thanks!

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  3. Hi Jabberwalky. Great post! I think it is so helpful to look back, and reflect on where things were compared to where they are now. When I look at some of my older posts, I realize how much I’ve learned along this journey.

    Regarding the structure for the day, oh I know just what you mean! Being responsible for structuring someone else’s day is quite the challenge. So glad that you have some respite options for J.

    We had our driveway sealed this past weekend, which means no walking/driving on it for 2 days. Jim would look out the window and say “I guess I’ll go sweep the driveway” (one of his favorite things to do). I would patiently remind him about why he couldn’t. He would reply “Oh, that’s right. Well, I guess I’ll go sweep the driveway.” Gotta have a sense of humor….

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    1. That’s too funny!! It’s true, it so helps to appreciate the humor when you can, because sometimes you’re reaching pretty deep for a calm response. But that calm and warm response is the kingpin to the whole tone of the day, it turns out.
      I kept trying to connect with the person in J that I “knew” was there, and who could, if only I said it right, respond to me as a whole person, with needs of my own, and a point of view, and so forth – well, yes, she’s still “there”, but not able to perceive me at all like she used to. It’s a perceptual problem, like not being able to see without glasses, only there are no glasses for this condition.
      Thanks so much for your support!

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  4. Look at how far you’ve come in two years! I’m glad you are getting some time for you. Never, ever feel bad about that. You need to recharge as we all do. I’m glad she enjoyed the musical. When my mom was in memory care, my then 5th grader and her All District Choir sang for her and the residents. What an amazing thing to witness. Feet tapping, people singing. Music therapy is do important. Glad to be following you…
    Jodi

    Liked by 1 person

    1. Thanks, Jodi – the respite group that J goes to does a lot of singing, and everyone seems happy when I see them at it. I do feel like we’ve come far, in learning how to live with this new reality. it’s definitely a long-distance hike, for us, rather than a sprint or even a marathon. I think I’m learning to pace myself so we can head into the next years in halfway decent shape.

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  5. I just read your post. You are a beautiful writer resulting dramatically in my ability to understand better your life with J. Even though God my not be part of what is meaningful for you I still have to say, God bless you and be with you on your travels. xoxo Tricia >

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