Christmas Card Confusion

The day before the movers were coming, in October, my dad announced that he'd like my help....with his Christmas cards! I do have to admire him for thinking and planning ahead, but this was a bit too much. I'm wondering if Dad was so overwhelmed with packing and the prospect of moving that doing Christmas cards seemed like a safer, more predictable activity. Anyway, I helped dad pack the cards and redirected him for the moment.

Earlier this week Dad and I got back to his cards. He had a pile of cards he had received in previous years and he had an address list for "Christmas" on his computer. He would tell me who he wanted to send a card to, and I would find the address and print out an envelope. We ran out of Christmas cards, having used up all of the leftovers from three previous years. Dad seemed to obsess about this and kept looking through the card box. Yes, there were cards, but they were general greeting cards (some of which we used) and Birthday cards. He had a hard time, a very hard time, letting go and moving on to something else. We put the cards aside and I went on home, promising to come up another day with more cards and copies of a Christmas letter we had crafted together.

The next day I had three calls from Dad. First, he had to tell me he found a pile of cards from previous years and he was worried that we hadn't made cards to send to these particular folks. He was quite insistent. I asked him to look inside the cards to see if he could see "done" written in them. Since he had been shuffling through the cards as I addressed the envelopes I had begun to mark them in this way. Yes, he saw "done", so he was put at ease. About fifteen minutes later he called me about the Christmas cards again. He was upset that we hadn't finished them. He could only find three cards, oh, and by the way, how super of me to put stamps on them. I had not put stamps on any of the cards. Then it dawned on me that we had made out cards for three family members and had prepared them for mailing. Dad had found those particular cards and not the others that were waiting for his Christmas letter. I explained this to Dad. He had a hard time understanding me when I told him that someplace there was a pile of other cards that we would finish when I returned. He was pretty adamant that we had only done three cards. A bit later he called a third time. This time he told me that he had a pile of cards and envelopes. He was confused about why they weren't sealed and stamped.
All three calls came less than 30 minutes apart. Dad was acting like a car spinning its wheels in the mud. He was working very hard at this and wasn't getting anywhere. He was stuck. This 'stuckness' is also called perseveration and it is a behavior related to the disease. It will help me to find ways to redirect Dad when he gets caught up in a cycle. This time I reminded him that we hadn't finished the cards and I would be up the next day to help him. I guess that was enough to help him move on as I didn't get another call.

The next day I returned and we finished the cards. They are signed, sealed and on their way to delivery.

One of my biggest frustrations in trying to help is that when Dad calls I can't see what he is talking about. Sometimes it is something on his computer screen. Other times, like with the cards, it is something he has in his hand. He sometimes has a tough time giving me enough accurate details for me to 'see' what he has. I have begun to research remote access software that would allow me to tune into Dad's computer to see his screen. I also realized that we might be able to set Dad up with iChat. In that way he could show me what is in his hands.

Mr. Toad's Wild Ride

Dad wants to drive. He doesn't like interfering with my schedule, or that of my son, to have us take him places. Although he can afford it, he doesn't like paying a taxi to take him out. And even though he's found he can easily walk to stores to get whatever he needs, he wants to drive. He wants the independence. He doesn't want to admit to his failings and he wants to be a normal guy. I think that in America cars are highly symbolic of virility and strength.
In March Dad had his driving evaluated by an occupational therapy organization that routinely evaluates driving ability. The recommendation was that Dad not drive. A report was sent to his Doctor. Dad stopped driving. When Dad decided to divorce my step-mother he also decided he needed to be able to drive again. Although he hadn't actually lost his license, as nothing was submitted to the State, he requested a re-evaluation from the Department of Motor Vehicles. Dad studied for the written test and he passed both it and the driving test. Dad began driving again.
Do I think Dad should be driving....I'm not sure. I worry that he will suddenly realize that he needs to turn and he won't check to see if other cars are in his way. I worry that he will be distracted by trying to change the heat setting or radio, and won't see another vehicle/person/road barrier until too late. It used to be that I didn't worry about him getting lost, but now that he's moved and is in unfamiliar neighborhoods, that actually has happened. Dad decided he needed a battery from Radio Shack. He printed out a map from Google to locate the store but had a hard time getting there anyway. Evidently he mentioned to the clerk that he had gotten lost on his way to the store and perhaps he made a comment about his concern about getting home. A customer in the store, one who obviously has some angel wings hidden under his jacket, led Dad back to his apartment. The good news is that Dad was frightened enough by this experience that he hasn't driven since.
Dad's car has a GPS system built into it. I'm not familiar with how it operates and I keep promising myself that I will sit in the car, program the GPS for 'Home' and then write basic instructions for Dad to operate the system. Dad's iPhone also has a map program and he can get directons on that. However, it too takes many steps that Dad can't seem to remember. I could write step-by-step instructions for using that as well. But,  I haven't done either of these things. I guess my procrastination is rooted in my conflicted emotions regarding his driving.
This week Dad got a letter from the Department of Motor Vehicles asking him to turn in his license. Apparently the Doctor finally submitted the report from March with the recommendations that he no longer drive. Dad wants a hearing. Out of principle, I agree with him. In practice, I think I'm happiest with someone outside of the family making the decision. A decision that probably is the best for my dad.

CCRC's

After Dad returned from California to see Jennifer and announced that he was going to file for divorce, I took him to see some Continuing Care Retirement Communities. I couldn't stand the thought of him being alone and cooking for himself. I'm sure he would benefit from a community, having food and social opportunities all around him.
Dad arrived home on a Tuesday and was disappointed that I didn't have an appointment at a CCRC until Thursday. He was anxious to see what might be available to him. That certainly was good news. It would break my heart to force something on my dad that he had no interest in! We had a great visit at this first community. In fact, the community was ideal and we really didn't even think of going to see another. That is, we didn't think about it until my dad was well into the application process and the organization indicated that because of his diagnosis of 'early stages of Alzheimer's Disease' they wouldn't take him.So, onward in our quest.
I was surprised at the number of very nice communities in our area. I also found it surprising to see the differences in prices. We visited communities that had buy-ins and those without. We visited some that had beautiful common areas, but terrible apartments. We saw some great apartments at communities that also had lousy amenities. We visited very large communities and those that were much smaller. We saw some that were in high rise apartment buildings and some that had fairly large campuses with walking trails and outdoor activities.
Fortunately we found a second community that Dad really liked. As he is the sort to make snap-decisions, within a week of our first visit he was finishing the paperwork and a move would shortly follow.

So, what did I learn in this process that may be of help to others?

•  I discovered that it is really helpful to preview the community myself. I have a good idea of what my dad would and wouldn't like, and he found visiting the communities very tiring. This way I could eliminate some trips and we could focus on the most likely candidates. 
• I also found that dad was easily confused about what he had seen at one community or another. Heck, I had trouble keeping them sorted out myself! So we set up folders with all of the information and I took copious notes at our visits. Since I was the official note taker he could relax a bit and concentrate on what the community representative had to say. I took pictures of the apartments we visited so he could compare the pictures to floor plans that he was given. I didn't take pictures in the common areas, but in hindsight this would have been very helpful for him in sorting out the communities and their amenities. 
• I began to start my inquiries by asking if the community accepts individuals with Alzheimer's Disease. I didn't want to run into another situation where my father would be turned down. 
• Each community is very different and the fees are often structured in a different way. 
• Type A communities charge an entrance fee and a set monthly fee regardless of the level of service required. Thus, if a person needed full-time nursing care, the fee would be the same as if he was living independently in an apartment. This is a 'Life Care' or 'Extensive' contract.
• Tybe B communities charge an entrance fee and a set monthly fee. If the resident requires nursing care they may offer it at a discounted rate, but their monthly fee would be higher than the monthly fee for independent living.
• Type C communities charge an entrance fee and a monthly fee with additional fees for services used. Thus, the resident may pay extra for transportation, classes, access to the gym, parking, etc. 
• Rental Communities: a few communities charge no entrance fee and the residents pay a monthly rental. Additional services may often be billed to the resident. 
• Spend one or more nights at the community. Every community we visited offered to have us stay for lunch or dinner in the dining room. Several communities have guest suites and a few offered to let my dad spend an evening. I think this was helpful for him. He had the opportunity to experience several meals and to talk to many residents. It helped him get a feel for the community.
• It may have been helpful in choosing one community over another if my Dad had listed or ranked services and amenities that he felt would be important to him before we visited communities. For example, he isn't a swimmer, but we did meet a couple who's first priority was a salt-water filtered pool. Certainly there were things we thought would be important, such as a transportation system, but it may have made the decision making process easier if the items were listed and ranked before we visited our first community. We built our list as we went along: nice view, two bedroom apartment, transportation, meals available....Dad is pretty easy to please!

Can You Hear Me Now?

When it comes to gadgets my dad has always wanted to have the latest and greatest. One of his more recent big-boy-tech-toys is his iPhone. Dad's financial adviser was showing him the iPhone a while back and he enthusiastically showed Dad everything it could do. Within a week Dad had his own iPhone and within a month he had given each of his kids a gift certificate to get  iPhones for ourselves.
I will have to admit that at the time I was not overly enthused because the gift of the iPhone meant that I would have to change to a different service provider, begin a new contract period and incur greater expenses. Gee, thanks, Dad! However, in hindsight it was a smart move. At least when Dad calls with a question about the workings of his phone I have some clue (unlike when he calls me about his Apple computer) and I have an iPhone in hand and can talk him through things step by step. For example, he often calls people in error, by trying to delete their listing on the 'Recents' screen. Since this screen is different than the Voicemail screen, he gets confused and needs me to point him to the 'Clear' button.
There are many times that I can't get Dad on his iPhone. Sometimes he turns the ringer off (as do I) in error when he pockets the phone. Other times, the volume of the speaker is turned down inadvertently as he handles the phone. I do the same thing and know, when we finally connect, how to help him to 'fix' his phone.

Does He? Or...Doesn't He?

I often wonder if my dad really has Alzheimer's disease. His doctor performed the MMSE (Mini-Mental State Exam) in 2009 and repeated it recently. A score of 23 or below is indicative of cognitive impairment. My dad scored a 26 both times.When I asked the doctor about her diagnosis, she stated that the 'patterns of behavior' she is seeing lead her to believe that he does indeed have Alzheimer's Disease. Once I asked her to what degree information provided by Jennifer might have influenced her diagnosis. She paused and told me that was a good question, and she wasn't sure. Jennifer, soon to be  my dad's ex-wife, tends to obsess about some things and probably has whined about pointed out all of the behaviors she has seen that highlight my dad's memory issues.
There is no doubt that Dad has very poor short term recall. Some days he will ask me almost the same question three or four times within a few minutes. Often I will be chatting about something I have done, and when I allude to it again, he asks me what I'm talking about. He occasionally misplaces his keys, wallet or a document and can't remember where he put them. He'll put something on his shopping list that he already has in the kitchen, either forgetting he has it or forgetting that he already purchased the item. Is it Alzheimer's or is it age?
Dad decided to divorce my step-mother because she was often away, visiting her family, leaving him by himself. I took Dad to see a number of continuing care retirement communities that have independent living facilities as well as long-term care programs and 'memory care' units that he may need in the future. We found a fabulous facility. The people were great. The location was ideal. The apartments were modern, roomy and appealing. Sadly, because the Doctor reported that my dad had the early stages of Alzheimer's, this particular community denied my father's entrance. How frustrating! How demoralizing for Dad. How does she know for sure?

What's for D?

As a kid I fondly remember my dad's return from work. He would sweep into the house like a sudden spring storm. His energy was palpable as it permeated the house. He'd come into the house through the garage, taking two steps at a time and calling out, "What's for D, Ruth?"

Shortly after his homecoming we'd sit down to a Cleaver-style, sit-at-the-dining room table, discuss-the-day dinner. My mother was a great cook. Although most of our dinners were fairly predictable; chicken, meat loaf, pork chops and the dreaded chipped beef on toast, occasionally she'd throw in a zinger from Mastering the Art of French Cooking. I think my mother had a secret yearning to be another Julia Child.

My dad never cooked. I have no memories of him grilling hot dogs and hamburgers on the grill in our suburban back yard. Oh wait, I do recall one time when my dad had to cook dinner. This was when we all had the flu. My mother had nursed my dad through it. Then, all three kids came down with it just before my mother gave in to the fever and aches. Dad returned from work and put together a memorable dinner that consisted of hot dogs (burnt), frozen peas (still rather cold) and applesauce (from a jar - can't damage that)!

When my mother died Dad was at a loss when it came to any of the womanly arts: laundry, cleaning and cooking. Luckily I lived nearby and could help him muddle through. He remarried and moved, so up until recently, none of this has been a problem. However, Jeanene has put the grandchildren ahead of my dad. She finds reasons to visit them and reasons to extend her stay. My dad prefers not to be with the grandchildren. He prefers to be at home and would prefer that she be there as well. Apparently they are both stubborn enough to have stakes embedded deep into the sand, so, Dad is once again trying to deal with planning and preparing meals.

Basically he's doing OK. Breakfast and lunch are pretty easy. They are the same each day. For dinner he does try to eat some vegetables. He is willing to have a salad that consists of some iceberg lettuce, some chopped tomatoes and a salad dressing that he likes. He readily eats this almost every night. We've also bought some frozen 'steam-in-the-bag' vegetables that he likes to do in the microwave. He loves fruit. He's been on a melon kick lately and will call me just to let me know that the melon I picked out for him is just perfect. It is the sweetest, most tasty melon he's ever had! What a guy! The protein end of things isn't great, but he does have some yogurt every day and he loves hot dogs. I try to help him get away from the additives in the hot dogs by suggesting fish or shrimp. He likes shrimp as a snack and he's learned how to pan fry Salmon or Halibut in a bit of oil with some herbs. So, he's lonely. He's having to prepare some food, which he hates doing, but he's not starving and he's getting adequate nutrition.

I tried to talk him into having me come once a week to prepare a meal and package some leftovers. He let me do it once, but after that said he'd rather take me out to dinner. Hmmm, so, maybe he doesn't like my cooking?! Actually, I think he just likes to get out so when I go I take some of our leftovers with post-it note instructions and leave them in his fridge. I have also learned that he likes me to write out a 'menu' for the week when we have gone shopping. I began to do this because he would hold onto things like Salmon for too many days before preparing them. It worried me that he'd get sick from eating something that was too old. When we shop I also put notes on perishable items saying 'Use or Toss by <date>'.

I have talked to a few home health services companies. I have mentioned them to Dad. I've explained that someone from the agency could come and prepare food, package left overs and clean the kitchen afterwards. He's not interested in getting help from this type of service. At least not yet. I'll continue to work on it!

Visit to the Doctor

I love my dad's doctor. She works one day a week in the Senior's Clinic at the University's hospital. The rest of her time is spent researching Alzheimer's and teaching. She is young. She is patient. She is compassionate. She is cute (and Dad notices that)!

Today she asked Dad how he was doing. She looked intently into his eyes as he talked. She never interrupted, even though he repeated things he had told her during the last visit, and the visit before. She talks directly to my dad and doesn't talk down to him. She validates what he says by paraphrasing his comments.The doctor did the normal 'doctor' things; listening to Dad's heart and lungs and taking his blood pressure. She reviewed his medications. Dad takes 2 prescription meds, calcium, vitamin D and 81 mg. aspirin.  The pills are confusing for my dad. He has quite a few bottles of Calcium and they are slightly different colors. That bothers him. He is also supposed to begin taking some Tylenol for arthritis. He had Tylenol gel tabs and tablets. That confused him. He thought Calcium and Vitamin C were the same thing. I helped him fill the cells in his monthly pill dispensary. We made a chart, taping each pill next to its name and dosage so that if he had a question about one pill or another he could check it on the chart.

Grocery Shopping

I picked Dad up and took him to the grocery store since Jezebel was still out of town. I told him that I had a meeting with a friend later on, so he wouldn't think that I drove all the way up to run him to the store. Dad had a carefully constructed grocery list. He seems to be really pleased that he thought to write down what he needs:

• hot dogs (Whole Foods or Boar's Head - not as good)
• lettuce (with a drawing of what it should look like)
• blueberries (check the bottom to be sure there aren't rotten berries)
• Rainier cherries
• tomatoes (not soft)
• ginger snaps (Nabisco)
• Arizona iced tea
• frozen dinners (in green boxes)
• V-8 fruit juices (not OJ - too sour)
• yogurt

As we walked through the store we added a few things;
"Dad, do you need milk?" Yes.
"What about cereal?" Yes, let's find the 'good' granola.
What about some shrimp (my dad's favorite snack)? Yes. I want point 7.  (Last week the meat/fish guy couldn't figure out what he meant by .7 - I resisted the inclination to ask, "So, you had some problems with 6th grade math?!")
"The Salmon looks good, do you want to get a piece?" Yes. (Salmon is one thing that I know my dad can cook.)
In addition we pick up some frozen vegetables that he can steam in the microwave. We also get some more fruit and some cheese.

I worry that Dad won't cook and eat the salmon right away. He can't smell odors very well so he probably doesn't notice if the salmon or shrimp smell strange. It bothers me that 'convenient' foods are full of nitrates, other additives and salt. It makes me sad that Dad is alone. Even though Jezebel is a lousy cook, at least she is company for my dad. But, today Dad taught me a shortcut from his apartment to the grocery store.