At the End of 2013 {Dad's Update}

Dear Children,

I am distressed that Mom's condition is going downhill all the time.  She has difficulty in finishing a thought that she feels is very important.  At times I can guess what she is trying to say, but other times I am clueless.  Today, as I usually do, I asked her to have the prayer before lunch.  She started out, but very soon she stopped and said "It's just this Alzheimer's".  So I finished the prayer.  That was a big sign that things are getting worse in that she generally prays for at least 5 minutes (and sometimes even thanks God for the food).  I know she has a feeling to thank God for many things, but at times she just can't verbalize her feelings.  Later this afternoon we discussed the possibility that eventually she may need a nursing home.  I told her that if she gets to the point that she becomes incontinent and does not recognize me as her husband, it may be necessary.  She agreed that that would  necessitate nursing home placement.

I have been thinking that I need to get some time away.  One possibility would be to do something like going to Bible Study Fellowship which I believe meets on a Tuesday evening.  That would necessitate her staying with (Simply a Daughter) unless someone else would stay with her here.  I am going to talk to a man who is active in that group to see if now is the time to join that group or if one needs to wait until later for a new study.

So far, Mom is very easy to manage as long as I know her limitations.  I do direct her clothing for each day.  I also have to do more of the supervision of the laundry. But I found out that I have my fallacies.  The last time that we did laundry, I failed to check the pockets to a pair of her slacks.  So we spent a long time picking pieces of the tissue off all the other garments.  :)  Of course if it would have been my pants, I don't use tissues and there would have been less of a problem.  But I learned a lesson.

I think that she did well with the holidays and enjoyed them very well.  In closing I want to say that I am holding up very well.  

Love,        

Dad

Another Update from Dad

Dad sent this out in an email to my siblings and I today...

Dear Children,

This is a quick note to let you know that I continue to see changes that indicate that her disease is slowly getting worse.  Yesterday we went up to PA to Aunt Rosa Lee's funeral. (She died on Friday.)   As we were going up 522 and then up the cove, I was thinking that that may be the last trip that we make on that route.  I don't know when another relative may die, but I feel that by the time that cousin Austin dies, that Mom will not be able to go because of her disease.  I didn't say anything to her, but I was saddened by that thought.  My job still is not a difficult one in that she remains very loving and not argumentative.  She depends on me for everything.  That includes whether she should close the drapes or turn off a light in a room that no one is in.  I have taken on the responsibility of selecting her clothes for the day.  

At the funeral, she was unable to know a lot of the people, but she asked some their names and they answered.  I think that some of them probably knew she had Alzheimer's Disease and therefore rendered their names before she could ask theirs.  

This Thursday is the last of the fall meetings of the "Early Stages" of Alzheimer's Disease sponsored by the Alzheimer's Association.  Barbara was asked to bring the music for 3 hymns and for me to provide the lyrics so that all can sing along with her playing.  I completed that project this morning.  We are using the hymns: Victory in Jesus,  Come Ye Thankful People Come, and Lutkins Benediction.  I will be announcing and leading the hymns.  I expect that we will not be part of that group next year, but one never knows, but I am glad that we can share a big part of our activities in dealing with the disease.  Her music is so important to her (and also to me).

Keep us in your prayers.

Dad   

In My Dad's Own Words

My dad has begun to send occasional email updates to all of my siblings about my mother's condition.  Copying those emails here will add to this record of my sweet mother's decline and will, I believe, be helpful for me to look back upon.

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Saturday, August 3, 2013

Dear Children,

I am writing this to you to let you know how Mother is doing.  I am sure that Simply a Daughter is aware of a lot that I am gong to say, but for completeness she is included.

I want to say that it is not a problem in being her caretaker.  She is not disagreeable or combative and is very cooperative for the most part.  Last Sunday Pastor Phil spoke on the topic "So, You Want to Follow Jesus?"  After a very good sermon, he had a time of quiet meditation for each of us to ponder over how Jesus is calling us.  Immediately I knew that Jesus was calling me to be the best caretaker of the one that I love the most.  It was not a new idea but confirmed what I knew.  

To report on how I think that she is doing: her short time memory has basically been lost.  But sometimes for something that is very significant, she remembers in part.  Many times when we are going some place, she will ask at least 2 or 3 times while we are in transit just where we are going.  I respond each time as if she had not asked it before.  It amuses me sometimes to hear her make a comment about how beautiful the sky is or how much she likes living in this area.  (This I can almost predict.)

It is interesting to hear her pray before lunch (that is her time).  She almost always thanks God for her and my parents who took us to Sunday School and church.  Sometimes she repeats this at least 2 times.  I am sure that God is aware of her condition and realizes that she is just confirming her faith in Him and is very grateful for what He has done.  Most times she prays for the family and hopes that we all will be in Heaven eventually.  Sometimes she even thanks God for the food.  Of course I am not only evaluating her prayers but also am praying that God will help her continue to be the same or even better.

We have a lot of friends that are aware of her condition and have given us suggestions as to what they have heard that might be helpful.  Consequently we are using a lot of supplements that may help her.  I have not figured the daily cost for her supplements and am not going to do it and tell her.  It is my feeling that using up the money to help her maintain her status is very valuable.  After all we are not using money to go on cruises (she detests boats and water) or go on trips to foreign countries (she does not enjoy airplane travel either).  So using excess cash to help her is justifiable.

There are days that she seems to be worse, but other days she is better.  It is difficult to determine what makes the difference.  I think that after we have gone to a meeting or activity, she seems to be worse.  Also, if she misses doses of MCT/coconut oil, she seems to be worse.

I will keep you informed periodically of her status.  She does not know that I am writing this letter.  But if you have questions feel free to e-mail me.  (She is past the stage of being e-mail literate.) 

As you pray, please keep us in your prayers.  I know that the wisdom that comes from God is very vital in my role as her caretaker.

Love,    

Dad

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Friday, August 23, 2013

Dear Children,

I am writing to you for your information on Mother's progress.  It continues to be a pleasure and a challenge to discern the best care for her.  At the present time, I think that she is failing some more. Just this evening I have concluded that there is one thing that I need to change as to her supplements.  There is one called Prevagen that she was on, and I felt that she was not improving.  It is one that I order from a company and is fairly expensive.  When she had taken part of the last bottle,I decided to leave them off and see if she got worse.  So this evening I am putting her back on them and will order more and give her some time to improve.  It is so difficult to discern her status.  

For the most part, I am quite grateful that she is so pleasant to be around.  She is so appreciative of what I do for her.  She never argues or get mad.  She does not break out in tears when she knows that her Alzheimer's has caused a problem.  I am impressed that at lunch when I ask her to have the prayer, she thanks God for many things and has an ongoing conversation with God.  Occasionally she even thanks God for the food.  (I hope that God knows her condition and receives her thanks as coming from her heart.)

I don't know if these letters are helpful for you and whether you want to get more.  So give me a short reply.

Dad

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Thursday, September 12, 2013

Dear Children,

It has been a couple of weeks since I wrote to you.  I want to say that in general things are going fairly well with Mom, but a few things that I have noticed recently concern me.  Last night was a bad night for me.  Around 3 a.m. we both went to the bathroom; and on returning, she announced that the connecting tube for the C-PAP was not there.  In looking for that, I could not locate it; but I did locate the cutting board that we had lost on Tuesday. (More on that later.)  So I advised her to take off the mask and sleep without it.  So she did that.  But I could not sleep.  I did notice that she must have gone back to sleep and WAS NOT SNORING.  About 4:30 I still couldn't sleep so I got up and drank some milk and went to the bathroom and that time I noticed the tube for the C-PAP hanging over the shower curtain rod.  My conclusion is that she may have gotten up earlier and ended up in the bathroom with the tube still attached to her mask and then took it off and forgot it.  The fact that she slept without snoring was encouraging because the time may come when she cannot function to use it.  Dr. C. says that a person does not get over Sleep Apnea, but I know that sometimes an expert in the medical field may be wrong.

Back to the chopping board incident.  On Monday Julia A. brought us some peppers to chop for the chili making for the Relief Sale.  So we used the board Monday evening.  Tuesday morning the board was on the kitchen table.  So I said to leave it there and we would have it when we got back to finish up the peppers.  After breakfast, as is my usual custom, I got the paper and read it while in the East Room.  Then I came into the kitchen to resume with the pepper project, and the board could not be located in any cabinet or closet that I looked in.  But this morning while we were looking for the tube, I saw the board on her bedside table next to the C-PAP machine.  Of course she had no recollection as to how it got there.

As I was contemplating and not sleeping, I got an idea to name one of the invisible beings in our house as "Aldis."  That is short for Alzheimer's Disease.  So when we have a mystery of how something gets lost, we can blame Aldis for the act.

As far as how I am getting along, I am concerned about my back.  Recently it has been hurting a lot more and does not respond to usual measures.  The other day it came to me that it may have been due to the fun that I had at David's new pool. I should have known better in thinking that this 73 year old could do what he did 30 years before.  I remember that after I dived in the water head first, I felt a twinge in my lumbar spine.  If that is the case, I think in time it will lessen if I behave myself.  The fact that it is worse, made me think that if I would need to be hospitalized for my back or any other condition, what would happen to Mother?  I know that Simply a Daughter and her family would try to handle it and probably would do a good job.  But I would constantly worry as to how things were going.  Please pray that I can get peace in my mind about this fear.

Thanks for reading this and praying about it. She does not know I am writing these letters so don't talk to me about them in her presence.  (Right now she is picking up sticks for Simply a Daughter's family to start fires.  She loves that activity.)

Love,

Dad

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Thursday, October 3, 2013

Dear Children,

It has been a couple weeks since I sent an update on Mom.  There has been a little more progression in her condition but is still quite tolerable.  It seems that when she does not get enough sleep she gets worse. (Now she is taking a nap..)

Also it is my opinion that when she does not get the full dosage of the MCT/Coconut oils, she gets worse.  

One change that I have noticed is that she is having more of a problem with selection of her clothes for the activity that we will be doing.  Of course she has had a problem remembering what we are doing.

Please pray that she will continue to be the loving person that she is now.  Also pray for me to be able to continue to do what is necessary to help her.  

 Dad 

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Wednesday, October 16, 2013

Dear Children,

I am writing just a short update to let you know that Mother's condition is gradually deteriorating but not much.  I have learned that I need to be more active in telling her what clothes to wear.  For instance, this morning while I was at the computer, she came out with her dress clothes on, and she asked what day it is.  She was thinking it was Sunday.  But when I told her to change the clothes and put on what she wore yesterday, she was able to do it.  

One thing that I need to do is to tell her what activity that she should be doing to fill up her time.   With weather like today, she can go up and work at putting Simply a Daughter's wood in the wood shed.  She likes that a lot.  She also will sometimes go take a nap at my suggestion.  Also when I want to watch sports on TV, I will tell her to play the piano.  That way with my headphones I can hear the announcers and at the same time can hear her playing.  She recently rediscovered a piano book that she probably got years ago.  It is hymn arrangements.  Always if she does not do them exactly, she will say that it is the first time for her to play them. (Sometimes I know that she may have played them the night before.)

I am always aware that things could get worse.  I feel like I am at the top of a slippery slope, not knowing when she will get a lot worse.  So far I am able to stay at the top of the slope and am doing all to keep from sliding down it.  She is so loving and appreciative of my care that it makes it much easier to do it.

Dad

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Wednesday, November 6, 2013

Dear Children,

As to Mom's condition, I can see a steady but slow decline.  I am sure that Simply a Daughter can see it also.  But I am also very happy that her general attitude seems pleasant and cheerful, and she is able to laugh about life when it is laughable.  I am trying to be gentle and compassionate with the way that I respond to her.  She is able to do many things for herself, but I have realized that I have to do more "coaching" on the small things such as clothing and everyday household items.  

Monday evening I discovered that I should not leave her here alone for any length of time.  I was babysitting Simply a Daughter's youngest child who slept the whole time that I was at their house.  Due to much traffic in town, Simply a Daughter was later in returning from her rounds in town than she expected.  When I returned here, Mom was somewhat anxious because she did not know where I was even though I called her one time.  This isn't such a big problem but it means that when I work at the clinic, I will need to make arrangements for her to either go with me or to stay at Simply a Daughter's house.  

Love,   

Dad

It's Come to This

This evening my dad told me that earlier today, when my mom was trying to tell him something about me, she referred to me as "the lady who lives up the hill."  It's not unexpected, of course, that she would forget my name, but it is sad.  And so the knife turns again...

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It seems that the days of leaving my mother alone are rapidly drawing to a close.

Although my dad is officially retired, he does occasionally put in a day of work in a nearby town; and previously, when he was gone from home for a few hours like that, Mother would stay down at her house and would be fine.  I would check in with her every so often, and Dad would call her from where he was working to see how she was doing.  But she was fine like that.

The past few times he's been gone, we've realized that she's not fine.  She doesn't know what to eat for lunch when he's gone--even if he calls and tells her what to eat--so I've started having her come up to my house to eat lunch together.  She seems to wander around rather aimlessly in their house--even if he gives her a suggestion of what she could do to fill her time--so now I find something to occupy her up here; sometimes that's carrying wood into our woodshed, or sometimes it's just sitting in a chair and watching one of my children do a program on the computer.  She gets delusional, thinking that other people are in her house--which of course would be quite alarming--so now we surround her with ourselves, with real people, in hopes that it will chase the phantoms away.

Several days ago my dad stayed here at my house with my youngest child who was napping, and I took the rest of my children to run some errands.  My mother was down at their house, but could not remember where Dad was and, consequently, got anxious and upset about it.  We realized that if he stays up here in the future to babysit for me, she needs to come along, too.

We're learning as we go.

********

One of the heavinesses of soul that I carry these days is the thought that it's no longer fun to hang out with my mom; in fact, hanging out isn't really the correct term anymore, it seems.  Now it feels like babysitting.

As the Alzheimer's progression continues and she loses more abilities, I find myself running to catch-up emotionally with where she's at.  When I come to a point of peace with her status (including whatever loss of ability she might have just had), then I can find joy in this journey.  But honestly right now?  I'm not feeling much peace or joy--just a dull, weary resignation that this is my life, and this is my journey, and I don't like it.

But the crazy thing is that I know that in the future, I will look back at THIS stage and think, "Man, I had it good."

All Mixed Up

While working together in my kitchen recently (something my mother LOVES to do), she turned to me with a big smile on her face and said, "I sure am glad you and I grew up together!"

So my previous post, that one about her calling me her sister?  I guess that wasn't a one-time thing.  I wonder if she'll eventually start calling me Joyce, the name of her real sister.

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This past Sunday was the annual family reunion of my dad's side of the family; and during the course of the event, Mom turned to Dad and, indicating my youngest son, said, "Now who does he belong to?"  Granted, there were a lot of people there, some of whom my mom had not seen in quite a long time.  I wouldn't have expected her to remember all of them or keep straight the relationships.  But this is my son, someone she sees every single day, someone she reads stories to and sits across from at the supper table and gives hugs and kisses to and tells "I love you."  Not only did she not remember his name (not a surprise there, since she only rarely seems to remember the names of my kids, except for my youngest who is our only daughter), she didn't even know that he was part of my family.  How much more sad can this get?

Don't answer that.  I know it can/will get even more heart-breaking.

**********

Our neighbors' names are Douglas and Wilma, and we have a very close relationship with them.  But recently when Dad referred to doing something with Douglas, Mom said, "Who is that?"  And the same with Wilma.

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My aunt, my dad's sister, visited from Chicago this past weekend and stayed with Mom and Dad.  On the first night she was here, Mom turned to Dad in their bedroom as they were getting ready for bed and asked, "Is someone else here in the house?"

"Yes," he answered, "Helen is across the hall."

"Who's Helen?" was her response.

Helen, whom she has known for over 50 years, has now vanished from her mind.

**********

And the journey along this hard, hard path continues...

I'm NOT Her SISTER

My dad is away for the day, and my mom is staying home alone.  It's not such a big deal because she lives just down the hill from us, and we can help her with anything she might need while he's gone.  A few minutes ago, I called her on the phone to see how things were going; and at the end of the conversation, she was thanking me profusely for calling.  "You're a wonderful sister," she gushed, "One of the best!"

Sister?  SISTER?

Of course I didn't correct her.  The days of correcting are long gone.

Oh, well.  Just another turn of the knife in my heart...

A New Way to Help: Eliminate Choices

As my mother declines, I am sometimes left scrambling to keep up, in the sense of knowing how to best help her.  At times, an idea of a way to make life easier for her will come to me, and then I'll ask myself, "Why didn't I think of this before?"  :)

For example, recently I have been noticing how hard it is for my mom to make decisions--really, any decisions.  She is much happier being told what to do, rather than having to try to figure it out.  For example, when she's putting ice in the glasses before dinner, she'll often ask how many pieces of ice to put in each glass.  My tendency is to shrug and say, "As many pieces as you want," because honestly, I don't care a bit whether a glass has two or five or twenty-five pieces of ice in it!  :)  But I'm learning that it is not helpful for me to give her such freedom because freedom demands a choice from her, and choices are HARD.  As much as I hate to feel like I'm telling her what to do all the time, I realize that it's truly better for her if I just say, "Three.  Put three ice cubes in that glass."  Eliminating the choice is a good thing for her.

In a similar way, I have had occasion recently to put food out on her plate for her, and I'm seeing how beneficial that is for her.  Rather than having her struggle to follow the thought process of "we're having taquitos for dinner, so I need to put some on my plate, and then I should have some salsa to dip them in, and here are refried beans to scoop up, etc.", I can do her a favor by eliminating that difficult thought sequence and simply putting the food on her plate.  She still knows what to do with the food on her plate!  :)

Because my husband loves Mexican food, we regularly have tacos for dinner; and virtually every time we have them, my mom has to ask, "Now how do I do this?"  Rather than realizing that you get a tortilla first, then pile all the meat and toppings into it before eating it, she is puzzled.  Rather than looking around at how the rest of us are doing it and copying us, she has to ask, "What do I do?"  When I can graciously and subtly serve the food to her already prepared and ready to eat, it makes life so much easier...and, I think, eliminates some of the mental pressure that she feels.