Brief Update on a good day

concerned_sister

I've read many discussions on how our PWD can get combative over their driving privildges. I realize it's still early days, but here's how it's going. Per last update, brother was prescribed generic for Aricept a couple of weeks back. He can complete more of his sentences than before. He says he's feeling much better. He and his wife report he goes right to sleep after taking it at 8:30 pm. That being said, we were only told he might think more clearly, and it can slow down progress, but it hasn't been magic, and his difficulties have not disappeared.

At about the time he started the meds we had a mini-show down and he was told that he would have to test with the DMV to retain his license. He would be getting something in the mail. In between he'd carpool to work with our younger brother. He held out hope that the medicine could help him enough to pass a test.

A week or so later I called the neurologist office, and the paperwork hadn't started yet, and I learned it wasn't so much that he could 'keep' his license, but that it would be revoked on the dr's say so, and DB would have to prove his abilities to get it back.

He calls me late today. Note he's had me work on his finances, had me filling out dental patient in take forms, scheduling appointments for his, all things he accepts that give him difficulties. On the call, he was stuttering, but attempted to make the points that I had said he would have the opportunity to drive again if he passed the test and nothing has happened, referencing no letter in the mail yet. There was only a slight agitation in his voice. I responded that he had to take the test to prove he could still drive. We talked of his Dr appointment at the end of the month. I told him that with his diagnosis of dementia, if there were any accident he and his wife could lose everything they own. In a somewhat beligerent voice he tells me "You're not a doctor!" To which I respond calmly, but firmly, "You're right, I'm not a doctor." I didn't agrue. I don't quite remember how he ended the phone call but it was likely along the lines of I'll talk to you later. He didn't shout at me, he didn't curse me. When I thought of other stories I read, I thought he actually handled it pretty well.

He called me a couple of hours later, and apologized for his tone of voice. I told him, in his shoes, I don't know that I've of done better. I can imagine it was pretty frustrating. We went on to another subject, and then maybe had 3 other brief conversations this evening. Younger brother called as he over heard half the coversation earlier in the day. YB then heard DB talking to some one and DB mentioned for now he's no longer driving. It seems he's coming to acceptance. I considered it a good day.

harshedbuzz

A good day is a good thing.

What you did there would be considered a "validation" strategy— recognizing his feelings as justified. Validation can be a very powerful tool in helping a PWD feel as though you are their ally instead of the enemy.

We were fortunate that dad's doctors were the ones who banned driving because it allowed us to validate the unfairness of it rather than be the instigators of his unhappiness.

I'm glad your brother seems to be doing well on the Aricept.
HB

concerned_sister

Yes, he's very happy with the difference it's made. The reports of sleeping better surprised me as I didn't remember that as a benefit. I do think that's real… but at the same time a lot of financial stress got lifted when he filed and paid his back taxes and other issues got addressed.

Jackie_K

This is great and always good to when things go well! Thanks for sharing with us!

concerned_sister

Sure, I'll share one more tidbit. I've been handling logistics on Dr appointments, labs, and other things this morning, on top of all the financials I've been doing lately. A very appreciative DB tells me, "You've been really great these last few days." I had to correct him, "I've been really great for decades." That drew a big laugh, and he said something about there was this one time 45 years ago…

It's nice to be appreciated. I think he got my message that I don't see it as any extra effort.

GothicGremlin

This is all good. I'm happy to hear that he's coming to acceptance. It's a tough one…

About the Aricept — when Peggy first went on it she told me that it made her feel "more clear". She was also on Namenda. Right around then she started having very vivid dreams, which were never a norm for her. I'm not sure to this day which drug caused them, but none of her dreams were bad, just vivid. Just as an fyi.

And about validation - this is huge. It was someting that I always did with Peggy as well. Any place where I could validate her, I did. Not only does it stop arguments, it builds trust. We always had a good, easy relataionship (and it sounds like you have a good relationship wth your brother), but more trust is always good. It'll pay dividends later when he hits the later stages. He may not be able to articulate the warmth and trust he feels toward you, but it will be there, maybe unspoken, and it'll help you both.

concerned_sister

GG, I'm sure my brother can relate to the "more clear" assessment that Peggy gave. DB has a dental appointment coming up. His wife asked me to communicate to the dentist that he was now on Aricept (generic) as part of thier records for drug interactions. It was interesting to me to observe my brother as we stopped by the dental office before going out to breakfast. He was legitimately concerned they might ask him to discontinue it if it would interfere with the planned dental work. Back in the car after we had that conversation, he was in a much lighter mood talking about how much he appreciated the clarity that Aricept brought back.

In other discussions, old song lyrics have come up. A variation on Paul Simon's kodachrome came in to my mind, "Momma don't take my Aricept awaaaaay".

It was such a relief to him that he'd continue taking it and seeing the benefits. I'll have to listen for any descriptions of more vivid dreams. So far, so good.

I'll try to boil down a story from my working years. I was a lead on a certain aspect of a major project. I had written some complimentary emails to some subordinates. It surprised me that I got a kind of "what am I, chopped liver" response from a superior. Forgive me for blowing my own horn, but I was respected in the work place. But that opened my eyes to how far a compliment could go to even a superior. We had what were known as spot bonuses that management could give out. A friend had a mouse pad with the picture of a dalmation. With a little creativinty and using that image, I gave that superior something from me that I thought she deserved a "spot bonus" for all the effort she had been putting in.

That and other things made me realize I had, "the power of praise". Even to those in the work place I had no power to reward financially or affect a performance review, I could still make someone's day by giving a sincere compliment. We all need that.

I do practice validation with my DB. And I still look for those things I can compliment him on. Along that line of thinking, I recently told him, he'll always be my smarter brother. That image of him will not change as he progresses through this disease.

Iris L.

Wow! I have always learned a lot from the members and I am still learning! I never heard of a spot bonus, but it sounds like a great idea.

I forgot to mention in my post about Mimi S that she was the first person that I knew to promote Validation Therapy, she recommended the book by the recently late Naomi Feil.

Validation is very important. If there were a term for the opposite of validation, that is what I have received from the people that I know, both friends and professionals. This is why I often say that professionals are CLUELESS!

Now that you mention it, I have been having vivid dreams. I call them "story dreams" because they are like epic stories during the night. They are all about me traveling by plane or train or boat, trying to get back east to NY, but to my home or to my schools when I was a teen or young adult. (I understand why PWDs want to go home.) On the way I have many adventures, not scary but interesting. I never thought that the memory meds could be contributing to those dreams. Over the past few years the story dreams are almost gone. I have begun having bad dreams, sometimes very bad, disturbing dreams. I have been on Exelon patch and memantine since 2009. I don't watch TV news or crime drama shows because I do know that they contribute to bad dreams.

Iris

concerned_sister

Iris,

How frustrating, dealing with those who practice the opposite of validation. I have heard that dreams don't actually have a story to them, that upon waking we fill in the story trying to connect the bits and pieces that fired in our head during the night. I had one recurring dream when I was very young - that if I spun my arms fast enough I could fly. Back in 2002 I had my first opportunity to go parasailing. When I was up there in the sky, I couldn't help myself but start spinning my arms. (I can remember a particular friend I cracked up telling my story after vacation.)

I'm sorry you're having the bad scary dreams. Generally speaking I don't watch a lot of TV. But when I do, Dateline is a good example of a show I watch. I can imagine dementia would certainly change my viewing habits.

concerned_sister

Iris,

I'm reading Mimi's 2009 testimony. It provides context for things I've seen you write about. You're an advocate for early testing. Mimi's testimony speaks to the fact that most folks don't get tested and diagnosed until they are reaching mid stage dementia. She mentions the value of best practices and the improvements that can be seen if diagnosis is made in early stage. Re the conversation here on validation, I was inspired to write an email to DB and his wife titled best practices. The body of my message:

I wanted to take a minute to let you know that you are already following some 'best practices' for those diagnosed with dementia. From what I'm reading, best practices include:

• Getting Plenty of Exercise - this is great that this is already part of your routine, xxxxx.
• Socializing - (SIL) you were spot on recommending that I get together with xxxxx at least once a week.  xxxxx already having walking partners is also 'a step in the right direction'.

Two other best practices you may consider

• Working on puzzles
• Mediterranean Diet and dietary supplements, such as Omega 3.

Both responded quickly, and enthusiastically with their thanks for the emails. Thank you Iris, I appreciate your mentoring.

concerned_sister

In a conversation here someone had recommended using Life360 with input from a Tile device for tracking the comings and goings of a relative. We set that up about a week ago. Moments after the above email exchange, I got the notification that DB and wife went out for a walk together.

concerned_sister

DB takes his medicine every night at 8:30 and goes to bed.

In our text chain he sent me one last message for the day.

8:27 Thanks with hope

Iris L.

CS, your family seems to be drawing together under this challenge well. You all have come a long way!

Iris

SherryRS

There are some wonderfully supportive responses in these messages. Thank you all.

concerned_sister

Sherry, thanks for reading along. I'll add another.

Iris,

I can imagine you'll appreciate this. Re the best practice of puzzle solving, I thought of an old game I used to play with the grandkids that might be just right for brother xxxxx. The other morning before going to the VA, DB and I waited while SIL did some bloodwork for an upcoming appointment. I reminded DB of the best practices and asked him if he'd like to play a word game. We just called it the beginning-ending game. If I said cat (C-A-T), the beginning of his word with have to start with the letter at the ending of my word. In this case a T. We went back and forth for a bit. When SIL came out we went for a quick breakfast. While waiting for our food with no other context DB just says a random word - and I realized he was starting a new round. We explained the game to SIL and she played along.

Today DB and I were driving to the local Veteran's Service Office. Once on the freeway DB pops out a random word…game on!

We were going back and forth, and I noticed he fell in to a pattern. It wasn't just words that fit, he put in the extra effort to try to give me a word that ended in K as many times as he could. Very Impressive when word finding is a difficulty per your diagnosis (and in practice). We made a stop. Though at about that time I reminisced with him what a great BOGGLE player he was (he was out of our league). We played a few more rounds as we ran errands. We got to the local VA medical clinic to set appointments etc. As we approached, I declared the game would be over once we turned in to the parking lot. At this point he rapid fires his responses to me. As we turn in, and he uttered his word, he declared himself the winner.

We parked, and he asked if we were gonna stay or just set appointments. I told him, "I know you, you just want to get back in the car again, to beat me one more time." He replied, "No competition." I won't say there weren't times he had to think a bit, started with the wrong letter, or repeated a word, but all things considered it was a grand effort and he had a sense of pride and accomplishment.

Iris L.

Wow, that's a great update! How wonderful that he can rack his brain for words, and even for certain words that end in K. We did play that game as children, especially on trips, but as I remember, we used place names of states, countries, cities, and such. Anything that brings up pleasant "vibes", for lack of a better word, is on the right track!

Iris

concerned_sister

I challenged him with it thinking it would be good brain stimulation. His level of joy and boost in self esteem were an unexpected bonus.

And thank you again for your mentoring. You pointing me to the testimony of your mentor started this ball rolling.

concerned_sister

FYI, in our family, the place name games were Alphabetical. The turn would pass from person to person starting with the first person naming an A place, the next a B place, etc.

H1235

It is also something fun for the two of you to do. You’re making memories. So happy for you. I find conversations difficult with my mom sometimes. Unfortunately she would not enjoy something like that.

concerned_sister

Thanks, Chug. He was always a wiz a word games. I think finding that 'that part of him' is still there when we compete has brought him joy. He has trouble with fluency, but he's still with it enough I can often finish his sentences for him when he gets hung up.

Knowing my brother as I do, I don't think he'd be as successful at work games out of a book being done solo. It's that element of competion. I've read how memories attached to emotions last longer than other memories. My instincts are telling me it's that element of competition that's firing something that helps him during the game. And also the fact that it's early days in his journey.

concerned_sister

I think I'll extend this conversation rather than start a brand new one. I wanted to update on how the not driving is going.

It's now been about 2 months since DB last drove. YB has been having issues with a car repair and DB has leant him his car. The fix has been slow for a number of reasons, and DB is getting anxious. I got a call from DB late yesterday. He wanted to report he spent money. Since I helped he and his wife get on top of their financial situation he seeks my approval (as in "good job") when he spends money with an eye towards staying on budget. He said he added YB as a driver on his insurance policy. I started to ask questions, and he slightly raised his voice. Calmly, I pointed out he had raised his voice, would he rather I just listen, or could I talk about that decision. (My career was in the insurance industry.) I told him that as long as YB was driving his vehicle with his permission he was covered. That YB's liability coverage would also cover him. I told him it's his money, but if it were me, I wouldn't have made the change (it added about $200 to his bill). As we hung up he said he'd give it some thought. I believe we spoke later and he had trouble cancelling the change on-line, and he'd handle it in the morning.

So this morning he calls and asks me to help with this. We decide we'll go to the office in person, it was open until 1 pm.

YIKES…as I drove over, I started thinking through all the scenarios. If we show up in person and he gets tongue tied it'll will be obvious he needs my help. (To our knowledge though he is not driving, the DMV letter revoking his license has not been processed.) Could this trigger a cancellation of his policy?

Being an insider, I remembered adding a driver could trigger pulling DMV records, and might cause the DMV action to show up.

I started dreading the conversation I would have to have with him.

When I got there he could read my face, and asked what's wrong? I asked for a piece of paper.

1. DB Only
2. DB + YB
3. YB only

I had him confirm my understanding. Before the change it was him only. Now both brothers are on the policy, not that he changed to YB only.

I explained the concerns I outlined above. But as we talked it through, it seems this may all work out right as an unintended consequence. The policy has YB as the primary driver and is unlikely to provoke a cancellation. DB will continue to not drive. Once YB's car is fixed, they'll take DB's car once a week to keep it in working order. As discussed previously, he holds out hope that when he sees the neurologist again to get tested about 6 mos from original test, he hopes he'll show he's capable of driving. I told him, based on knowledge of the disease, that's not likely. (Very calmly) I explained I would cancel the policy when YB gets his car fixed, and sell it, and use the money towards a new car for his wife. But, it seems that $200 is his investment in his hope he can drive again. He agreed. And then it came out of his mouth, not just agreeing, that if at the next test if the doctor still says he should not drive, he'll sell his car and get his wife a new one.

I agree with anyone thinking that's a lot of reasoning with someone with a broken reasoner. But he seemed to be taking it all in. I was about to leave and noticed I was low on gas. I invited him to go with me to Costco so we could use his discount to fill my tank (he likes when he can do that), and then we went shopping for a few things he wanted. Getting out and buying just a few food items lifted his spirits.

All in all it worked out pretty well. YB pointed out that targeting the $ from selling his car in to a new car for his wife is the type of thing that makes him feel good. The dread I was feeling was replaced with feeling pretty good by the time I left.

concerned_sister

@Iris L. ,

I thought of you yesterday, and your recommended best practices. One of the best practices was socialization.

I went over to DB's house yesterday morning and he fixed me breakfast (frozen breakfast sandwiches prepared in the air fryer). He asked if I'd mind taking him to get a haircut. (Knowing lack of care about hygiene can be a sign of progression, I was happy he asked.) I took him to the shop he's been going to for decades, while I went to the post office and got a quick car wash. After that, we stopped at Costco for a few items, and then went home to look at financial stuff. In the beginning of this journey, we'd go out to breakfast and then he'd shoo me away. But now we can easily spend time with me navigating to the various sites he has an interest in. On the way home from the haircut he provided an insight. He mentioned when at work, if he's having an ongoing chat with YB or another coworker he doesn't struggle to be conversational. But he said if there's a situation where he's left on his own working on a task for 30 minutes or so and someone comes up to him, it's just difficult getting started talking. I had no clue about the "restarting" issue. At his home we had visited the site to look in on his investments, looked at recent on-line bills and went over his budget. Gone is the need to shoo me away. I left just about the time his wife was due home (partially because I was taking up space in the driveway). But he had a big smile on his face that he managed to stay talkative the whole time.

Iris L.

PWDs have difficulty in switching from one task to another. They cannot multi-task. Also, they have difficulty in initiating a task or activity on their own. They may be able to continue if someone starts them off.

In my own case, I had a lot of difficulty with speech and maintaining a conversation flow. After beginning Exelon patch, my speech was improved. Now, I can keep up a conversation. But my speech is not as complex as it was before this problem began. So, it may be that the Aricept is helping your brother improve his speech.

Iris

concerned_sister

I believe it's the aricept that made the difference. He's not where he was pre-onset, but the flow is much better.

Is there a drop off in your oral communication vs written? I've always appreciated the great job you do here.