No shoes - No feet

Dale Brown, retired basketball coach from L S U, wrote in his book,"I complained when I had no shoes until I met a man who had no feet". Joyce has all her parts but the meaning was not lost to me since the last blog was written. I have always said that I was very lucky with Joyce because she was a "happy camper"and she also was an A-typical Alzheimer's victim. She is healthy, fit and can do most things for herself. I left you on the last blog heading to Lake Charles for an injection after a 5 week interval due to an infected tooth. When I got there , because of equipment failure the night before, there was no Enbrel to inject. This was going to eventually delay Joyce's injection another 3 weeks or 8 weeks between injections.

I had already planned a trip to San Antonio to let Joyce visit the two daughters that live there, Michelle and Danielle. We left the wednesday before Memorial Day weekend and had an easy trip there. Since they were both working thursday we drove up to Wimberly and ate lunch with my cousin and his wife. That was Joyce's last good day for over three weeks. That night Joyce came down with an intestinal disorder. I found out later that the antibiotics they gave her for her tooth had wiped out the good bacteria in her system and she had developed something called C-dis..(i think) which is not fun. Needless to say it curtailed some of our activities but still allowed the daughters to get to spend some time with her. Other than Joyce's malady it really was a very nice visit. On thursday I had made arrangements with Dr Ryder to stop in and get an injection on the way home on tuesday but after consulting with him on the way home tuesday we decided to wait until Joyce was well due to Enbrel's effect on the immune system. While traveling back tuesday I called and made arrangements to take Joyce in to see Dr. Fontenot, our regular physician. I brought in a soiled 'depends' and turned it over to the lab when we went there after seeing the doctor. Dr Fontenot explained that this malady is slow developing, it was almost 3 weeks since the tooth extraction and initiation of the antibiotics. He intially wanted to wait for lab results but after dealing with it for 5 days already, I asked him to be proactive and start her on the meds that day. Luckily she wasn't dehydrated and the lab results confirmed his diagnosis. He initially gave her a 10 day prescription but it took an additional 8 days of meds to finally get her well. During that time she became very sedate and almost non-responsive. I could see the effects of Enbrel had worn off and she had become zombie like. I was finally able to get her injection on June 10th. It was obvious, even on the way home, that the benefits were still there. Joyce continued to improve for the next 5 or 6 days. She seems to be back to her old self now and no worse for the ordeal. As for myself I got a glimpse of what it could be like later and just reinforced my recognition of how lucky I am that she is like she is and not like many are. The one thing we did find out was that we can stretch injections out to 5 or 6 weeks without noticable drop off in the effectiveness. We will pursue this the rest of the year. Needless to say the last 2 months have been a humbling experience. I am so glad it is in the past now. Thank you all who keep up and care and I hope it helps someone.

caregivers advice for dummies 101

Because of the tooth extraction and Enbrel's affect on the immune system we will go to Lake Charles tomorrow which is 5 weeks. The commented advice on the affect of other physical problems may hold water on Joyce. Since her extraction and subsequent intake of antibiotics she has shown a significant change for the better. Even this fifth week hasn't slowed her up at all. I am beginning to wonder if even longer intervals may be better. I will discuss this with Dr. Ryder tomorrow.

Last Friday was a big day. At long last we were able to install her new bridge on her new implants. In addition the dentist replaced a crown that had come loose and repaired the filling on the tooth in front of the extraction. Joyce had to be put under because she isn't the most cooperative patient in the chair. All went well and they also cleaned her teeth.

On Saturday she showed up with another loose crown. I wrapped it up and set it aside and then scheduled a visit first thing this morning to recement it. All was going well as I was dressing this morning until I couldn't find the crown where I had left it. Then I remembered that the maid was here yesterday and thought out loud OH S... Well I spent 40 minutes going through trash until I finally found it. I fully understand the jokes on CSI etc about going through trash. Next time I will put it in a small ziploc bag and not a tissue. It is a lesson I won't soon forget. At least I found it and the dentist recemented it this morning. I can't remember having a more depressing feeling than when I realized it was in the trash.

Joyce's eating and the amount of fluids she drinks have increased dramtically since the extraction and also she has resumed her almost incessant walking. It is hard to keep her sitting anywhere. This is a really good thing. Until next time ... PAL

FRAILTY IS UNAVOIDABLE

Joyce is doing fine and so far I haven't seen a difference going to a four week cycle between injections. I am also holding up very well.
I didn't realize until this week how frail and delicate our health is. We feel things in our bodies and react to that by either self treating or going to a doctor and letting he or she treat you. The key to maintaining good health is telling your doctor the whole truth about your condition. Wednesday night I put Joyce to bed as I usually do and she seemed fine. Slightly after 1 AM I got her up to change her depends and I was shocked to see her jaw swollen. It had popped out in just 6 hours. Thinking back over the last few days I couldn't remember anything that would have suggested a tooth problem. This is where aphasia, the lack of ability to communicate, is most dangerous. First thing in the morning I took her to our regular dentist who said she had cellulitis and needed to be treated by an oral surgeon right away. They called one and got me in right away. Joyce will not cooperate using only a local deadening so they had to put her under to remove the infected tooth as well as give her some initial antibiotics. She seems to have weathered the ordeal ok except that the swelling hasn't gone down yet. I am giving her antibiotics for a week orally.
After talking to Dr Ryder we decided to postpone next weeks injection a week since enbrel suppresses the immune system. Joyce should be fully healed by then.
By the way, getting x-rays of Joyce while she is awake brought on a whole new set of challenges for the Oral Surgeon staff. It took three techs and myself to get it done and it took three tries. Needless to say this wiped out everything I had planned to do thursday. Fortunately Joyce slept very well last night.
PAL

Time goes by quickly

Hello to everyone who tries to keep up with Joyce. I apologize for not updating before now, to me it seems like yesterday. Much has gone on and very little has changed. We had a very nice trip to High Point for Christmas. Danielle held her last Carolina Christmas dinner for a while as they have moved to San Antonio and are getting settled. Joyce weathered the trip up very well. At least she is still a good traveler. We thoroughly enjoyed the visit and Trish and Danielle said that they didn't see much change in Joyce. They had not seen her since jan/feb in California so that was encouraging. We are still going to Lake Charles for injections every 3 weeks but starting now I am going to 4 weeks. From my view she seems better just before the shot than just after. We can always go back to 3 weeks if demands it.


As I reflect back on caring for Joyce I laugh at all the things I learned and have written about in this blog. Joyce still dresses herself but I lay her clothes out. I have to encourage her step by step to do things such as put on this or take off that as we go through our daily cycle. In high school and college most guys learned how to unhook a bra with one hand. Obviously some were better at it than others and I guess some had more opportunity to practice. Well let me tell you there is nothing close to similar in unhooking and hooking a bra. Some times she will and sometimes I have to hook it because she either doesn't want to or doesn't understand the verbal request. I really admire the dexterity of all women who hook them up blind. I have to see the hooks to get it right. It has now become a job and not a fun game.

Joyce is still a happy camper and hopefully she will stay that way for a long time. The only difficulty I see, currently, is that she is eating slower and has to be encouraged to eat all on her plate. NO THE FOOD HASN'T CHANGED. Her weight is still good and she seems to be very healthy. Hopefully this brings you up to date on where we are. Thanks again for all the support and love.
PAL

A Thanksgiving Slip

It has been a while since I added another update. I waited because I have seen things with Joyce that I wanted to verify or confirm before I put them to print. She has become more independent and less responsive to things the past month. Missy came for Thanksgiving and saw the same things that I did. Joyce is still better than before January but she has slipped a little the past month. She is healthy, stable and active but doesn't respond to suggestions or demands the way she used to respond. As a result, it takes longer to dress and undress her and to feed her, although, she eats very well. She is still an A-Typical AZ patient. She cannot communicate but seems to be aware when things are going on around her. Missy said she didn't respond to "mom" any more, only to Joyce and she can't sign her name anymore. She just prints random letters. Missy and I hope that this is just a cycle that she is going thru and that things will return to the previous level. We had a wonderful visit with Missy and great food for Thanksgiving. Danielle is moving to San Antonio in January and will also be only 8 hours away. Joyce and I will be going to Highpoint for Christmas.
Thanks for all the support and prayers
PAK

Sisters and the weather

The weather finally got cold enough to drive Joyce and I out of our Tivas and shorts. Last weekend Joyce's three remaining sisters came to visit her. It has been a tough year for her side of the family. They have dealt with two cancers, the death of the oldest sister, Dorothy, and Joyce's ongoing Alzheimer's. Of course Joyce has no comprehension of any of this and I doubt that you could do anything to make her understand. As it is so often said, "that is a good thing". She is still the happy camper and seems to be holding steady except for the an occasional fit of obstinence when I am in a hurry and need her cooperation. Two sisters were here in April and thought she was better than when they came then. One hadn't seen her since before we bagan the enbrel effort and said she saw a marked improvement. Outside opinions are encouraging.
We had our regular medical check up and all is well, we both even lost a little weight. Thanks to all of those still keeping up. Your prayers are greatly appreciated.

PAL

Flying Straight and Level

There is not much to report. Joyce has been as stable as I have seen her the past four weeks. I usually experience a fluctuation in behavior or actions as we cycle through from one injection to the next. This last cycle was as smooth as I have ever seen it and has been since October 1st when she got another injection. Joyce still performs all the daily functions such as eating, dressing, undressing, putting on her jewelry and brushing her teeth. I do have to set some things up such as lay out her clothes but she physically puts them on. She still likes to pace and will pace for hours up amd down the driveway if I let her.I give her as much freedom as possible depending on temperature and rain.
We visited our regular physician last monday and so far all results indicate that we both are in excellent health, at least for two people in their late sixties. My LDL was 65 which the Doc said was great. Sorry I do not have more to write about but glad I don't have anything bad to say about the present. If you are looking for excitement try reading the Police Blotter in your daily paper. Just don't vent your rage on anyone you love. Over time you will come to enjoy normalcy too.

PAL