Update

Just realized that I haven't given you an update on Gregory in a while. So first that and then to the post which brought me here so late at night.

Gregory continues to do well after a hectic first month arriving at Lieberman. His strength continues to return, he is more and more alert, he is happy and periodically cries for joy.

Communicative - no. Able to walk on his own - no. Able to feed himself - somewhat as prompted and when able to eat finger food.

Since he is still in a wheel chair, and by the time he notices he has to go to the bathroom, it is too late so we have "accidents." But the staff cleans him up quickly. He gets upset at having to "pee or shit himself" but by the time it is done, it isn't a remembered issue.

He has had many visitors and several repeat visitors. He is always happy to see our friends and family, may not remember your name but certainly KNOWS YOU and feels his love for you.

When reminded (which I try to avoid) of his past he gets a little upset: piano. painting, swimming. etc. He still is very much (fortunately) in the moment, doesn't ask why he is at Lieberman and doesn't ask about going home. He doesn't ask about the past or inquire into the future.

I have hired a helper to be with Gregory from 11:30-5:30, five days a week. Our Northwestern companion spends time with him the other two days a week.

I encourage you to visit Gregory if you are so inclined. I will go on the first visit with you (just to fill you in on the details and to help you acclimate) and then you are welcome to go back whenever you want (or we can go together again if you prefer.)

I would ask you to avoid visiting between 11:30 and 12:30 and 4:30 and 5:30 which are meal times. It gets a little overwhelming to have too many people around at that time. If you arrive and he is an an activity you can join the activity or have the helper take you and Gregory to his room for a visit. The helper will give you and Gregory  your privacy.

There is candy and cookies in his "kitchen corner." There are beverages in the refrigerator. Help yourself. If you want to offer something to Gregory, first get the helper's help.

If Gregory tries to get out of his wheel chair, encourage him not to. If at any time you are uncomfortable with what is going on, ask for help from his private helper or any of the helpers around.

If you do have any questions or concerns, please feel free to give me a call and ask.

Milestones

Often times milestones mark achievements and celebration. I am sad to report that the milestone Gregory and I reached tonight is not cause for celebration.

We were watching a movie and I noticed that he was becoming agitated. Nothing about the movie would have caused that. I asked, "Are you OK." And he said he was not. "What's the matter?" He didn't know. I made my usual suggestion, "Do you have to go to the bathroom?"

"Maybe," he said and got up. "Where?"

"Go to the bathroom." He left the room while I took a few more seconds to stop the video. I followed him into the bedroom where he was standing holding his penis. "Pull your pants down and go sit down." He didn't know what to do so I moved him into the bathroom and as I started to help him pull down his pants, releasing his penis, he began to pee. On himself. On the floor. On me.

He was very sorry and very apologetic. I was very soothing and calm and loving. He finished peeing in the toilet and I began to clean up the floor, took his pants and slippers off, and wiped up his leg. He apologized again and I told him it was nothing to be sorry about, just that there were implications involved. "You didn't recognize the "feeling" as an urge to go to the bathroom?" I asked/stated.

"I guess so," he answered. For a while now when I sensed he was upset about something I sent him to the bathroom and he was surprised that he had to take a dump. This is the first time that urination was the culprit. Also he had waited so long that he had the "accident."

The implications are my needing to be more alert to his changing mood, might need to check every hour or so by asking and/or sending him to the bathroom, might need to begin using what I called "Protection Pants." You get the drift of my euphemism.

All I can say, is that reporting this here is helping me get through my numbness, should help you to keep up with our "progress," and is part of my continuing open and honest (if not brutal) documentation of our journey.

Honestly, I am so sad and numb and worried about the future that I don't know what to do.  Tomorrow we are/were excited about a Wagner opera: 1:40 Act 1, 30 minute intermission, 1:05 Act 2, 30 minute intermission, and 1:10 Act 3, then the drive home. There is a handicapped bathroom on the main floor (where we are sitting) so I will just have to be super alert.

Meanwhile, for tonight, maybe a short TV show in favor of abandoning the long movie and some popcorn?

Retro Normalcy

Besides keeping Gregory safe and happy, I feel my most important role as life partner and caregiver partner is to maintain, for both Gregory and myself, as much of a sense of normalcy as possible. That means daily routines, life skills, meals, entertainment, interactions, social relationships, sense of home, etc.

But I have come to realize that the "normalcy factor" shifts as quickly and as erratically as Gregory's Alzheimer's shifts. What was normal last week, yesterday, earlier today is not necessarily normal this week, today, now.

This realization adds a new understanding of my role and while it doesn't make it any easier, it does create a validity to the roller coaster of my emotions, difficulties of day to day interactions, and sometimes impossibility of providing for Gregory.

P.S. I have recently become Gregory's Bowel Movement Coach. I'll let you decide what that involves but lets just say that I hope it is only the very, very beginning of Gregory's incontinence. Coaching is much easier than changing the whole ball game of bath rooming.

Caring for Someone With Incontinence?

I haven't had to deal with this in great detail except when Gregory has been ill but it is good to know. Most likely at some point, we will all have to deal with this. SPOILER: It's a shitty job!

By Ann Cason at www.caring.com

Here's the thing about handling incontinence: It's the turning point upon which many caregivers feel they can no longer look after someone at home, and for some good reasons. Incontinence can be frustrating and difficult to deal with. But at the same time, there are many approaches to coping with incontinence that can make it less awkward and challenging than a beginner first anticipates.

Everybody who's had to change an adult relative's diaper has what I call the what's-a-nice-girl (or boy)-like-me-doing-in-a-situation-like-this moment. You never wanted it to come to this, and here you are. It's hard, but have patience with yourself. After you do it several times, a real sense of intimacy and closeness takes place; it's a good feeling to be helping another human being resolve a basic problem.

To decide whether you can handle incontinence, it's a good idea to explore the options:

1. Talk to a doctor to be sure you're pursuing all the treatment options. Many causes of incontinence are fixable. Treatment ranges from medications and lifestyle changes (such as scheduled bathroom visits) to wearing protective undergarments and covering the bed with waterproof covering.

2. Speak the language of incontinence frankly. Many people try to ignore the subject or use euphemisms, which only makes things more awkward for everyone involved. Better to be matter-of-fact: Everybody spends part of their day urinating and eliminating. As we age, some of us develop problems with our bladder or bowel function. You'll lessen both your embarrassment and that of the person with the trouble if you can remain straightforward and talk about it like the medical issue that it is. It's really a pretty ordinary thing.

3. Go easy on yourself, and give it time. Family caregivers often place high expectations on themselves. They think they have to manage everything perfectly, every time. It can take awhile to get on top of an incontinence situation -- for example, to learn how to clean a person after an accident or for the person to adjust to wearing special protective pull-ups.

4. Get help if you need it. Sometimes there are physical impediments to taking care of someone with incontinence. A person with a bad back or other health condition might need a home attendant to help during certain hours, for example.

5. Realize that sometimes it's not possible for an incontinent person to remain at home, and that's OK.Every care situation is different. A small woman with a large and rambunctious husband with dementia, for example, may not be able to go it alone if she doesn't have his trust and cooperation so that he's willing to sit on the commode while she removes the pull-up, cleans him, and has him step into a fresh one.

Don't think of an alternate living situation as "shoving him off" but as a more positive reality, which is that you're creating a situation in which you're getting someone the help he needs to function safely.

HOW TO HELP SOMEONE CLEAN UP AFTER AN ACCIDENT:

Use the right supplies and a consistent approach. It's important to get the skin both clean and dry after an incidence of bladder or fecal incontinence. Many older people will need help with this because they lack the mobility to do a thorough job, or they may feel embarrassed and want to dispense with the cleanup quickly and ineffectively.

Try storing a cloth bag of supplies in the bathroom, and a second one that you can grab to take with you when you go out (or just stash it in the car). In it, keep:

• Some extra incontinence pull-ups or panties
• Wet wipes (such as children's diaper wipes or other wipes made for the skin)
• A body wash that doesn't have to be rinsed (these can be bought in medical-supply stores or drugstores that carry medical supplies; they often feature aloe vera as an ingredient)
• A washcloth
• Cornstarch or powder (optional)

First, wipe the area clear with the wet wipe. Then partly wet the cloth with warm water and apply some of the rinse-less soap. This product saves you work and time. Pat the area dry with the dry part of the washcloth. Some people like to apply a cornstarch-type powder -- usually sold as baby powder -- to aid drying.

Let the person know what you're doing at each step: "Now I'm going to use a wet wipe." Offer to let them participate, if they can: "Would you like to clean over your privates yourself?" (Go over the area again if necessary.)

Replace with a clean, dry incontinence product.