Thursday, September 21, 2017

The Grieving Disease

I have another name for Alzheimer's disease.  I call it the grieving disease.  It seems to me that when I start dealing with one aspect of Scott's illness something comes along that makes me take ten steps back.  This usually involves tears and adjustments and eventually acceptance.  Acceptance until something else about Scott is lost to me.  I honestly don't know who people who don't have a belief in Heavenly Father are able to deal with all that is required in helping a loved one make this journey of forgetting.

Arizona Update

The good news is we made it to Arizona in one piece and your dad handled the drive extremely well.  We stopped several times and I had him walk around a little.  I also switched between music channels and he seemed to enjoy the music.  In fact several times he sang along and was clapping.

The not as good news was the visit to the doctor.  It was probably the most frustrating experience I have had in a long time.  I know there is not a positive outcome with Alzheimer's but I knew less coming out than I had already known going in.  The one thing that I did learn was that 10% of Alzheimer patients have seizures. That means that he will have to take seizure medicine from now on.  Dad has lost a lot of weight and so the doctor wants to switch him to another medication that will make him more sleepy but will improve his appetite. I am uncomfortable with that possibility.  The nurse took him in and did a series of test but the doctor didn't tell me anything about what the results were.  His only telling question was "do we have long term care insurance?"  I guess it is good that I read everything I see about Alzheimer's so I know what is happening and what is coming next but without that information I would have left without any help at all.  The seizure has taken a toll on him.  The week before the seizure I was noticing he was really getting more mellow and our four drives each day had gone down to two (mostly instigated by me because he didn't seem to care.)  He is now very lethargic and doesn't seem to be aware of things around him.  I suspect that is the affects of the seizure medicine.  The dose he is on is the lowest they give.  Now the doctor wants to add switch from one medication that is supposed to make him even more tired so I am not sure about that.  On Wednesday of next week I have a doctors appointment here so I plan to talk to him about maybe keeping the old medication if the new one creates more problems.

We came home this morning and the trip was also very uneventful.  It was so nice spending a little time with Christian and Amy and the kids.  Bill, Bev, and David came up from Sierra Vista and we all went to dinner together so that was also a special treat.  I told the doctor that we won't be coming back (not because I was mad at him--but I was!) but I know that there really is nothing more he will be able to do and putting dad through the trip just doesn't seem worth it.  

Sunday, September 17, 2017


I always think I am getting the hang of Scott's Alzheimer disease and then I get thrown a curve!  This morning at 6:50 I am dozing in and out of sleep when all of the sudden Scott makes the most horrible sound. It was so bad that I literally jumped out of bed.  I then experienced the most painful sight that I could have ever imagined.  The seizure lasted for about four minutes and ended with
his eyes rolled into the back of his head and blood oozing out of his mouth.  Not something I want to ever experience again.  After a number (7 in fact) of hours in the ER he was released with a prescription for anti-seizure meds and an appointment to see his regular doctor tomorrow.  The doctor in the ER thinks that his seizure was caused because of dehydration.  I suspect that is true because getting him to eat very much or drink enough water has become a real challenge.  Bless his heart he doesn't remember a thing about any of this but unfortunately, I don't think I will ever forget the terror I felt!

Saturday, September 16, 2017

Dear Elaine,

Senior Class Picture 1967-1968
My journal prompt that I decided to do was, write a letter to teenage you.  I have spent the week thinking about this and it is actually pretty hard, but here goes!

Dear Elaine,

You are a teenager now but I have such good news for you.  When you get to be 67 years old you won't remember much about the drama, the embarrassing moments, the old boy friend, or how much you think you hate school.  Honestly I don't think you even have to wait that long to realize that those few years were just a brief moment.  All the friends that were so important then will be a vague memory and by now you realize that your best friends turned out to be your brothers and sisters.  Now when I think of being a teenager I remember how wonderful it felt the first time my dad gave me the car keys.  I also remember how awful I felt when I got pulled over by a policeman for making an improper lane change.  I had to tell my dad about it because my little sister was in the car and I knew she would if I didn't.  Guess what--that was when I saw a side of my dad I hadn't noticed before.  He wasn't mad and in fact--he smiled and said, "I bet you won't do that again."  Even at 67 I never make an improper lane change!  I remember my first job and how rich I felt when I got my paycheck.  I remember gaining a testimony of the Church of Jesus Christ of Latter-day Saints which meant that everything had a purpose and a wonderful outcome in the end.  Another thing that happened to me as a teenager was that I had the ability to help other people and do nice things for them. Sad to realize it took so long.  I guess the most important thing I want you to know is that life just kept moving on in spite of the times when I was overwhelmed with insecurity.  I wasn't a popular girl but I do remember having some really nice friends and loved spending time with them.  I am embarrassed to remember that I had a boyfriend who would bring me home after a date and then go over to another girl's house and hang out with her because her parents didn't have a curfew like mine.  Even though I heard about it from other people I chose to ignore it because I just wanted to have a boyfriend.  I know pretty sad--but in the end I got stronger and gained a sense of self and still remember how empowered I felt when I finally told him not to come around any more because I was way to good for him!  You see life just kept going on and it got better and better--not necessarily easier and easier.  The experiences you have as a teenager helps you learn how to cope with the uncomfortable, treasure the positives, and enjoy the journey that will be ahead for you.
Don't give up!  Don't give in! And don't worry because when you are 67 you will find that you have chosen the better part.

Love, Elaine

Monday, September 11, 2017

Update on Dad

It has been a while since I have updated all of you on your dad and since you are all so good to call each week I do try to keep you posted on what is happening.  Maybe I do this more for me then any one else because it is good to actually commit my observations to paper (kinda paper!).  It has been really eye opening to me to realize how long dad has had Alzheimer's.  I guess it was my way of avoiding the obvious. Being married to the absent minded professor made it easy to camouflage the reality that things weren't quite right.

With all of that in mind and the reading I have done on the stages of Alzheimer's I found the following.  Stage 1-No impaired behavior.  2-Very mild impairment 3-Mild decline. 4-Moderate impairment. 5-Moderately severe impairment.  6-Severe impairment and 7-Very severe decline.  In taking care of dad I believe that he is in stage 6.  According to the information I have that is characterized by confusion or being unaware of patient's surroundings or environment, extreme personality changes and behavioral problems, the inability to recognize faces except for very close friends and relatives, loss of bladder and bowel control, and wandering.

Although a few of these things aren't apparent or extreme I am definitely seeing a decline which requires more attention being paid when he has to use the restroom to make sure he is clean and put back together when he finishes.  I often have to clean the toilet and flush when he finishes.  He is often disoriented and even in the house he isn't sure where he is.  I still don't see that wandering will ever be an issue with him because he has a hard time being out of my sight.  If I get up and walk to the kitchen he follows me.  That includes bathroom breaks as well.  One evening I told him I was going to take a shower and left him watching the television.  When I finished the shower and came out he was standing in the dark by the bathroom door and just about gave me a heart attack!  His personality changes are subtle which involves crying and continually asking me if he is okay.  He does seem to know something is wrong with him but doesn't know what it is. He recognizes only Andy and Angela and the kids now.  At church he knew several people but now he doesn't respond to them when he sees them.  He is always very nice to everyone though and listens closely when I talk to anyone (I think to find out who they are so he can acknowledge them.).  He chokes at least once a day, mostly when he is drinking water and sometimes at meal times.  His appetite has definitely declined and if I didn't make his meals I believe he would have completely stopped eating.  Even now I have to coax him to finish a half a sandwich or the bowl of cereal he eats.

In spite of all of what I have written don't lose hope.  He is still his kind self, laughs like crazy when he watches the Big Bang Theory (much to my chagrin!), loves being around Caleb and Ava and talks about Paw Patrol all the time.  Many of the television shows scare him and I change channels often.  Even Perry Mason is sometimes hard on him.  I am very able to take care of his needs so far.  The biggest challenge I deal with right now is knowing what he is trying to tell me.  He often tells me things that make no sense so I try to show that I am listening even if I don't know what he wants.  Again, it is doable and I am grateful that he is doing as well as he is.  Last week Caleb casually explained to me that pretty soon Grandpa would forget everything and I thanked him for telling me that.  I sometimes feel so sad that our grandkids will only have that to remember and forget all of the times he spent with them playing, reading, and talking.  This is bittersweet!

Friday, September 8, 2017

Check It Off!

Pinterest is the greatest and sometimes it can be a curse!  They give me so many ideas and of course when I see what someone else has accomplished I get a hankering to try my hand at it as well.  I wanted to paint my kitchen cabinets white and of course I opened Pinterest hoping they would talk me out of it.  Didn't happen! The wonderful people who share their expertise make me believe that I can do anything--and that the project will be a piece of cake.  I read everything I could, wrote down the steps needed, found a new product that didn't require the cabinets be sanded and then I went to Lowe's and talked to a clerk in the paint department, who happens to be actually knowledgeable, and then I decided to tackle the project.  That was almost a month ago and yesterday I spent the whole day putting everything back together.  I am pleased with how it turned out--but don't plan on ever doing that again!  Was it a piece of cake?  No--but the icing is really sweet!

Three Coats--Lots of dry time

Almost finished!


Monday, September 4, 2017

Caregiver Tips

I often get information about Alzheimer's and some of it is helpful and then there are the ones that I wonder if whoever wrote it ever knew anyone who really had the disease.  Recently I received one that I thought was the most accurate description of what works well with dad.  The author is Ryan Bridges.  I thought I would share his ideas.

1.  Speak simply.  Many people who care for patients ask open ended questions such as, "what would you like to eat for lunch today?"  Someone whose brain hasn't lost its ability to connect information  into clear ideas and responses would find this easy to respond to.  Someone with Alzheimer's would find that question overwhelming.  It is better to ask them a question that can be responded to with just a "yes" or "no."
2. Patience is essential.  A loved one with Alzheimer's is in constant struggle to regain speaking and thinking skills they've lost, which keeps them agitated.  Rushing the person you provide care to won't help.
3.  Make their environment as peaceful as possible.  Clutter overwhelms everyone.  It's a form of sensory overload.
4.  The power of touch.  Stroking your loved one's face or brushing their hair are simple gestures that can send a strong loving message.  Holding their hand can help get their full attention and can also provide them with reassurance that everything is okay.  Hand-holding unites you with them in their struggle.
5.  Laughter helps.  Laughter is therapeutic.  It has also, however, been shown to be beneficial to those with memory loss.
6.  Physical exercise.  Exercising regularly can stimulate blood circulation to the brain.  Giving the person you care for a daily workout can result in giving them clarity and bringing their surroundings into greater focus.