How Mom Seems to Differ With Dementia

I've been thinking, pondering, musing, wondering....what have you, about how Mom has changed in the past months.  Some of it is positive, but there are other factors that I find curious - and am looking for some answers....

Mom with her friend, Sally J.,  many moons ago

First of all, most patients with dementia seem to have a personality change.  They switch from one demeanor  to the opposite.  Most become angry and mean.  Not Mom.  She's grown sweet.  What am I implying?  I'll leave you to your own devices.      There are those in her cottage who seem quite sweet and gentle.  There are others, too, who are not ones you'd want to spend a great deal of time with, too.

Secondly, there is the weight gain.  Mom has gained quite a bit.  According to all the reports and statistics I've read, the majority of patients tend to lose weight.  But, Mom's metabolism has slowed.  She has grown more lethargic and unable to spend as much time moving about as she once did.   Mom used to go hiking, play tennis, and have other assorted activities during the week.  Yet, in the past years she's grown weary much more rapidly month-by-month.  Perhaps it's been a growing trend for her;  however, the weight gain has been quite noticeable.   This is due, in fact, to her small dosage of quetiapine.

In the past year, we've seen Mom decline from wanting to take walks, go out and enjoy the elements, wanting to venture to a movie, or even go shopping, to someone who isn't quite sure what she would like to do.

She has gone from being a little-off conversationally, to someone who cannot carry much of one, unless re-directed.  She has lost most sense of time - meaning that she isn't clear what day it is, nor what month.  She does remember people, but not events.

Christmas happened a while ago, and visits fade quickly in her memory.  She does have a flickery recall, but not as illuminating as a year ago.

Last year I could count on her to be up and at the go for Mass.  Now, she bides her time, sleeping in, and not truly realizing what may be.

Last year she read.  Now, she dabbles, but to no avail.  No words from the page stick to her mind; she's happier looking at pictures in books or magazines, and sometimes reading an article, but don't inquire about the information.

She still does the crosswords, and enjoys Scrabble and Bingo!  She does love a good visit, especially from the RLC.

Her bathing, once a norm, is off and on again.

She is hiding more things in drawers, and forgetting she actually has some items.

The disease is progressing, as evidenced in the pains on her side.  This is normal.  Eventually, I suspect this will begin to paralyze her on her right side, making movement more difficult.  She shuffles, but not completely - and yet, alas, this too shall prevail.

It will be interesting to see how she does in 2015.   How great a decline we've seen this year - what will the next bring?

A Checklist For Your Parents or Loved Ones If You Suspect They May Have Dementia, Part II

6.  A Neurologist
     What's the difference between a doctor and a neurologist?  Well, a medical doctor can take care of the body, and work with the neurologist.  They run the physiological tests that keep your loved one in good health.  It's important you form and maintain a strong bond with them, and be sure they understand the form(s) of dementia your loved one is experiencing, or demonstrating signs of.
    The Neurologist should be one who understands the differences between forms of dementia.  If they don't, then keep searching and ask others for referrals.
    The Neurologist is able to determine the benchmarks of the disease, as well as the direction you're headed.  They offer support, and are also a conduit between the patient and the doctor.  Be sure both doctors are communicating!!!

7.  Care Options.
     Know your Care Options.  In Portland, there are just under 200 care facilities, or so I've found, which claim to have Memory Care.  That doesn't mean there are just under 200 real memory care facilities.  Also, speak with the doctors and determine and question the ability for foster care.  When Mom was first taken to St. A's, there was some talk that going through some organizations would take her out of memory care and place her in a foster care;  this would have been absolutely disastrous!  However, there may be those for whom this would be ideal.
      With Dementia Patients, Memory Care comes in many forms.  Mom suffers from anxiety which demands she has an open and the ability to move about without feeling confined.  One of the first centers I'd visited would not have served her well, despite their reputation, nor that they charged much more for less.
      Also, with LBD patients, there must be a limit as to the number of residents in the living facility.  It's not a matter of "The More the Merrier".  Mom has 12 in her cottage (her included).  The other cottage mimics the number.  Dementia patients need to have smaller numbers about them.  They cannot deal with crowds.  Mom's number is about the limit.
      There is room to move about, and the caregivers are wonderful.  They are able to give me up-to-the-minute reports on Mom.  They also have a great sense of humor when it comes to dealing with her demands.
    How do they communicate with you?  Visit the home when you can at various times to get a sense of the atmosphere, and consider if this is truly where they could spend the rest of their days.
    This leads to another issue:

    7A.  Does the Care Facility Care Up-to-a-Point?  Or Do they care all the way through to End Of Life?
The less you need to move your loved one, the better.  Luckily, Mom will be cared for until she passes.  Other facilities will keep patients until they become physically incapable to move about without assistance;  at this time, they will need to find another placement within a small window of time.  Is this something you believe is in the best interest of your patient?    Wow.  That's a heavy one!
    7B.  How are Medical Visits taken care of?  Is there Medical Help In-House?  Do they drive the patient to the visits?  How is all this managed?
    7C.  How Are Privacy Issues Managed?  Mom refuses to have anyone near her while she showers.  So, we have a plan in place that they check in on her to ensure she's bathing, but they do not venture into the bathroom, unless she's in there for a certain amount of time with no signs of movement (10 minutes).  This way we're all assured she's bathing and keeping her sense of dignity and privacy.  Will the facility be as flexible as this?
    7D.  Room to Move.   Are there gardens and ways for the patients to get outdoors and move around?  Between Mom's cottage and the other, patients are encouraged to go outdoors and venture into the other cottage, while the weather permits.  The same staff manages both sides, so there isn't any chance of someone being "lost" on either side.  Patients can also view television and movies on both sides, depending on their tastes, if this is an option.
     7E.  Does the facility provide Physical Therapy and Other Activities?  Mom has opportunities to exercise, go to "music concerts", Bible Study, Book Groups, and Bingo, among other activities, as long as she's accompanied to the main part of the facility (the non-memory care).  This encourages physical and mental activity which is crucial, rather than allowing her to just sit about and do nothing.  There is great encouragement for her.

8.  An Elder Law Attorney.
      This, too, is crucial.  The attorney should be able to answer your questions regarding Medicare/Medicaid, payments, how to work within the system, Pay-Downs (in order to receive Medicaid benefits toward residential and/or in-home care), an all that.  Your attorney should also understand all the workings of the system and be able to communicate that to you in an understandable and caring manner.

9.  An Ombudsman.
     Any care facility or any facility that deals with the elderly will and should have this information readily available to you.  This is a volunteer who works with the resources and can provide support when it is needed.  For example, if there is an issue in regards to care at a specific facility, then you call on the ombudsman in order to facilitate and achieve the necessary results.
    Mom was put in touch with the ombudsman for her area after she arrived at St. A's.  He came in and listened to her concerns.  She told him she had been kidnapped and forced into the facility for no reason whatsoever, despite all the evidence from the previous hospital that dictated she enter into a memory-care.  After he left, she felt her concerns were heard, even though nothing came of it.  However, they will run an investigation should those concerns merit such an action.  
   That number, for our ombudsman, is located just inside the entry for the cottage for any and all to see.

10.  In-Home Care Resources.
     This can be critical, especially if you're caring for someone in-home and need to have some respite.  I know of Visiting Angels, who charge a nominal fee, and can do light housekeeping, and other jobs, while also doing activities with your loved one.
    There are also Adult Day Care facilities around, as well.  These can help with activities, and allow you drop off your loved one while you run away to the spa, coffee, or back home for some needed rest.  With my grandmother, who had AD, this was a life saver, allowing my parents to maintain their jobs, and also run errands  or have some down time.

11.  Last, but not least, Support Groups for You.
       If you go to the Alzheimer's web page, or the Lewy Body Dementia Association website, you will be able to locate support groups, hopefully (there wasn't one within 150 miles of my location until last Spring), in your area.
     These, not only, let you know you're not alone, but also provide great resources and feedback from others in your situation.  We have, too, a social worker who can run interference should the need arise, but also provides resources available, as well.
   

I know these feel long-winded, but I hope they provide you with some idea of some necessities required in order to help those you are involved with with Dementia.

To be forearmed is to be ready for any next steps.

I hope I didn't (although I realize I probably have) leave anything out.


 

The Holiday Week Ending 12/29/2014

What a week Mum has had!

She had Christmas at my brother's house, which was discussed last week, and then, Friday, she had a visit from my youngest (not younger) brother and his son.

They had lunch at Elmer's, where Mom gorged on waffles and strawberries.  Then, later, they went for a walk around Laurelhurst Park, just down from where we lived over 50 years ago.   Mom hasn't the stamina nor the endurance she once enjoyed, but a short walk was all it took and then she was good to return to St. A's for a nap.

My brother remarked that it was nearly impossible to have a conversation, as Mom was hither, thither and yon in her thinking.  After a year, it would be a shocker, but he's right - Mom's slowly sliding downhill with her thinking.

Since that time, Mom has been enjoying the cards sent to her from England, Port Angeles, and Portland, among other places.  She truly relishes showing them off!

I asked her how she enjoyed her Christmas gifts, and she stated that she didn't receive anything yet; when prodded about the gifts that were in her room she stated, "Oh, I got those a very long time ago."  Well, how time seems to fly for her!

Today we went to see "Unbroken", about Louis Zamparini.  It truly paled in comparison to the book, but it did interest her enough for her to comment during the viewing:
     "Oh, look!  They're taking a train in Alaska!"
     "Well, is that man a woman or a man?  It must be a man, because they wouldn't allow women to be in charge of one of those camps!" (this was in reference to the man who played 'The Bird').
      "Why don't those men bathe?  Please, just take a bath!"
      "That man is acting very oddly.  He needs to stop screaming and hitting the walls!"

So, it was somewhat obvious she wasn't really following the storyline.  Oy.

There was, too, a strong pronouncement of the Lewy Lean.  Several times I needed to ask if she was sleepy - no.  She was just listening (yeah, right!).

We then went to the store to procure some oranges.  But, she also needed bananas and cereal.  She said she wanted granola, but demanded (once she saw the marvelous selections) Special K with Strawberries and Yogurt.  It proved futile to make clear to her that the yogurt was dried, and she'd need milk.  Oh well.

At the check out stand she went looking for her purse, even though I kept telling her she'd left it at home.  So, off she went into the cart of the people behind us, rummaging through their goods.  I tried to stop her, but the couple asked her if she would like their produce.
    "No, I was looking for my purse.  Have you seen it?"
     "Not in our cart, ma'am.  But, if you'd like to buy our groceries for us we'd approve!"
I laughed.  Mom just walked away without comment, and had completely forgotten the interaction by the time we reached the doors outside.

Yes, Mom is faltering, but getting her out for an airing is also quite good for her, too.  She needs to be stimulated in many ways, even though there is no recognition.  She does note the dead trees, and wants someone to take them out; next sentence she's stating it's still January (too late to be December, she says), but the leaves should be on most of the trees (didn't you know that? ).

A Checklist For Your Parents or Loved Ones If You Suspect They May Have Dementia, Part I

Because it's the holidays, and I won't be able to conclude the week until tomorrow, with Mom, I've tossed in this piece, which will be the theme for this week.  Watch for the second part of this post on Thursday, and the usual Sunday post, tomorrow, Monday, 12/29/2014.  



For years we suspected that Mom wasn't quite right.  But, when you're a kid, you don't really know much about dementia - in fact we knew nothing  (Okay, a bad joke, but it was true).  Alzheimer's hadn't really come to the forefront, and if an elderly relative was "daughty", then that was attributed to aging and the aging process.

Today, more is known of Dementia and more than just Alzheimer's (AD).  Now, we have Vascular Dementia, Sundowner's, Alzheimer's, Parkinson's Disease Dementia (PDD), Lewy Body Dementia (LBD), and more.  They're all different, yet they all share the element of Dementia.

More and more of the aged and aging are developing symptoms, and we never know just who or when.

So, with that in mind, it seems practical to begin to put together a checklist for those of you who might want to begin arming yourself with resources.

1.  Durable Powers of Attorney.
      This is something that could very well be the most crucial document in your possession.  This allows you to manage any and all accounts for your patient, with the understanding it's all benign and you are working with their best interest at heart.

2.  Medical Powers of Attorney.
      This is something about which you should speak with your loved ones.  Do they want a DNR?  What are their wants medically?  What sort of End of Life procedures are they asking for?  Yes, a rather uncomfortable conversation, but crucial.
      Also, this allows you access to the physicians and to be present in procedures.   Doctors are able to converse with you and help you in determining the best courses of action, and they can also work with you as the disease progresses.
        With the HIPAA rules, this is also a must have!

3.  A Physician Who Understands and Acknowledges the Patient's Needs and Wants.
     Have a conversation with your loved one's physician about medications and dementias.  Find out what they actually know, understand, and determine whether or not they will be a vehicle to help move forward, or a hindrance.  A well-meaning doctor who knows nothing could do more damage than good, and this could decrease the quality of life for the loved one.

4.  A list of medications.
      Know what medications your patient is using, as well as the dosages.
      Research those medications using WebMD.com, or another that your physician or pharmacist refers to you.  You should be aware of the side effects, as well as the usages.  Do some cross-referencing, as well, to make sure that medication is the best one to be using.
     For example, many LBD patients are using Risperdal, and there is talk of a patch with Exelon.  Some see the benefits, and others are experiencing negative side effects.  Mom is on Quetiapine, and this is the best for her.  So, there are options.  Just be sure you know which will do the best, and which will not do damage.

5.  A list of Dementia Resources.
     Go online.  Visit the NIH.gov and roam around.  Visit the LBDA.org site.  Visit the Alzheimer's Association site.  Look at the Alzheimer's Reading Room, and other sites associated with the forms of dementia.  There are quite a number of good blogsites out there, as well, and people share quite a bit.

      

Happy Christmas - or What Day Is It, Today?

The weather was wonderful.  Not warm, but not raining.  The sun prevailed most of the day, even though the temperatures never quite broke 44. 

Lawrence picked Mom up at the usual time, 3:15, and then treated her to a drive through Sauvie's Island as a bit of a diversion.  Mom thought it rather depressing, with all the dead trees, and whatnot.  As I mentioned in an earlier blog, she is in denial it's Autumn, and this is Nature's course.  

They arrived just as I was departing my car with the gifts, wine and champagne.  Mom looked clearly out of her element.

She was confused by the basketball game going on, wondering what sort of channel the boys had on.  But that was easily diverted.  

She did state that we needed to wait for my other two brothers to show, and this was repeated a couple of times.   She accepted they were with their families in Washington and wouldn't be coming, both times she asked.

We went in to open gifts, after a bit.  

Mom was clearly not aware of what day it was.  She kept asking.  Lawrence and Kathleen gave her a large box and she peeked inside.  I asked her what it was.  "Bathroom stuff," she answered, with no affect.  

I gave her my gift, some lotions from L'Occitane.  She was still unimpressed, and was a little annoyed at my wanting her to smell one of the lotions.  This action clearly confirmed my suspicions that she is unable to actually smell anything. 

Then she wanted to go home.  More and more it's obvious she doesn't care to deviate from her normal routine.  A little outing here and there is fine, but evenings she seems a bit put out; although it's quite good for her.  

When we moved out of the living room, she remained and spoke with Nicholas (Kathleen's oldest) about his schooling.  It was a positive conversation and she seemed to be back to her normal self - in a sense.

She was pretty good about the wine.    And she seemed to really enjoy the champagne with dinner.

She ate a healthy meal, but not a great deal.  And, after, it was very obvious it was time to go - even though it had been only a couple of hours.  Oh Well.....

On the way home she became rather snippy.  Then, she went over her To-Do list: 1)  We need to go over her accounts and her monies;  2)  We need to arrange for her things to be moved in the morning to Port Angeles, so she can return home;  3) We need to speak with Mr. Manning about ---- not really sure, as she was blurring her words.  

When I dropped her off she was quite tired.  She plopped into her recliner while I put the new bathroom rugs in, and folded the old ones and put them in the cupboards.   She wanted to keep the box (really?  As though there's room!), but I assured her it would be re-used in the recycle bin.  She allowed me to do this.  

The med-aid came in and gave her her medications and her hand cream.  Mom has her rubbing it into her skin, rather than doing it herself.  Honestly.  Norma Regina!  

Tomorrow my youngest (not younger) brother is coming to take her to lunch.  This will be good for her, as well, but she will be, probably, quite agitated by Saturday when she needs to re-adapt to her routine. 

Christmas has come, but the season remains.  But with Mother, it was a blip on her screen;  it never really happened.  However, it was good to have her in the festivities, while there's still some spark to her eyes.  

Her spark seems to be dwindling little by little, and compared to last year there is a huge progression of the downward.  Sad?  Yes, to be sure, but she's still with us, and hasn't forgotten who we are.  That's the best gift we could ask for at this time. 

Reliving Christmas Treats

For years, Mom made lots of treats at Christmas.

She made Mount Rainiers, Butterballs, Congo Bars, Peanut Brittle, Sugar Cookies, Spritz Cookies, Nanaimo Bars, Fudge - with AND without nuts, and other assorted goodies.

Going through her recipe box has been a blast from the past.  Unfortunately, much information is locked somewhere in her mind where it's inaccessible, now; we can only guess.

So, I began putting together her recipes on the computer and saving them to the cloud, where they can be shared and fingers won't erase or smudge the information.  Much has been trial and error, and there are so many of them it's a bit difficult to get them all down; but one-by-one they're getting done.

Recently, my sister-in-law asked for the recipe for the Mount Rainiers.  Everything was there - except the number of eggs.  So, I guessed 2.  I prayed that was the right number.  This morning I tried the recipe as I gave to to Peg.  Yahoo!  I was correct.

Other recipes are missing oven temps, among other vital information, but through trial and error they're being found out, but it's a slow process.

The wonderful part of all this is that Mom isn't in the kitchen all frazzled, as she used to be.  Now, it's simply taking the candy to her (in small doses) and allowing her to relish them.  

An Odd End to the Week Ending 12/21/2014

Sometimes it's best to just let your thoughts fly freely through the atmosphere.  Most times, though, as we're all somewhat used to, it's good to have them in a container where they're accessible to any and all.

Today's thoughts few freely - truly - and it was quite an interesting ride!

I arrived to take Mom to Mass around 930 this morning, as she's usually up and about waiting.  But, this morning I found her in her room, sitting down doing whatever she was doing.

I had brought her some goodies:  Mount Rainiers, Toffee Bars, and Rich Bars, which she used to make for Christmas time each year.  She told me to put them in the refrigerator.   I also brought her some cards from people she knew in Port Angeles, which arrived at my doorstep.

She eagerly opened them, and showed me.    Then she stuffed them back into their envelopes and she put them on her dresser.

Next, we needed to put on her stockings.  Where were they?  She told me they had been stolen, along with her slippers and shoes.  Hmmmmmm.  Where could she have put them.  Under the bed? no.  Under her pillows?  no.  In her closet under a stack of blankets?  Aha!  a slipper to match the other.  She still wasn't satisfied.

I then opened the cabinets under the sink.  No.  The drawer under the fridge?  Aha!  The shoes and the stockings.   She told me someone was playing tricks on her.  Oh well.

While I had her putting on her shoes, which she found to be a sign that Satan had possessed me, I ventured out and spoke to the med-aid about getting her medications for our outing.  Here I discovered that she had just only risen from bed.  She had been complaining of nausea and pains.  Funny.  She hadn't said anything to me.  Oh well.

So, there we were, me thinking we were on our way out - how silly!  We just got her ready to eat her breakfast!  So, I settled for a cup of coffee and helped her read the paper.  Next, she worked on two crosswords from the same paper.  Time moved on but we did not.  There was no moving her.

Finally, it was past time to arrive at Jean's for lunch.  So, we set off for that part of Portland, driving merrily through the streets, detouring around Lloyd Center and venturing through other neighborhoods.

We finally arrived to a warm greeting.  Jean had also purchased a padded folding chair for use when the RLC came to visit Mom in her room!

Jean's daugher, Jenny, and son-in-law, Aldo, were also present.  I'd brought Jean treats, as well.
One of the goals, today, was to have Mom write Christmas Cards to her friends in Port Angeles.  Jean mentioned Nancy, but Mom said she had died.  Jean showed her a card she'd just received from Nancy, but Mom pooh-pooh'ed it.  So, I dialed my phone.

Nancy answered, and I handed the phone to Mom, who thought it in bad taste to call the dead.
"Is this you? or a recording you made?" Mom asked.
"It's really me, Norma," came the response.
Mom had a few more probing questions to ensure Nancy really wasn't speaking from the tomb.  Eventually they were happily chatting away - about what, I couldn't tell you, except that not all Mom said made any sense -- quite a few non-sequitors, a few things that fell from the sky and became the topic, etc.  But it also demonstrated how strong her hallucinations and delusions can be.  Of course, I'm not telling you everything, because that would be too much.

Finally, they ended the chat.
"It was so good of her to call from so far away!" said Mom.  "That was a great act of charity!"

I didn't touch that.

So, the conversations were off.  Mom and Jean talked about family, and Mom asking Jenny all sorts of questions about her family, forgetting, of course, that Jean is her mother.

She even asked me some questions that related to me as her own brother, inquiring as to whether or not I'd visited my brother in Japan while he was teaching there and in the seminary.  Trying to help her identify me was somewhat confusing for her - but in a minute she would know me, and think I was talking nonsense.  <sigh>

She wrote some cards, after lunch, and we departed.

On the way home, Mom asked me, "If you were married, and owned your own home, would you rather be married or single?"
I wasn't sure she realized the question so I parroted it back to her.
"That's right," she said.  "Which?"
"Well, let's try putting it this way - I'd rather be single than marry the wrong person."
"That's a very wise response," she stated.
Whew!

So, we got back home, and she was still going on about the phone call with Nancy.  Will she remember tomorrow?  Will she recall any of today?  That's a tough call.

Yes, she did ask about Dad and his doings recently, and of her parents.  Luckily I can figure out what to say quickly, and she accepts it.

So, a promise to take her to Mass on Wednesday evening brought a weary smile to her face, as she began to wind down for a nap.

I've a feeling this is the beginning of a whole new stage.

A Day In the Life....A Visitor's Observations of Mom Today

The following is a note sent to me of the visit by the RLC, yesterday, with Mom.  I edited it a bit, and put into italics those things that will help put the reader at ease with more of a knowledge base..

Connie and I got to St. A's just after 1 pm.  Norma was glad to see us. 

 We settled in, and saw Norma was reading mail from friends.  I assumed they were Christmas notes; no, from March and October. She again showed me a note from Nancy Moore--"It's too bad she died. She was a good person, and wrote such interesting letters."  We went back and forth a few times, insisting that Nancy is alive,.  She did not back down; we just went on to other things.  (Later, when we were "Scrabbling," Mike, the Cottage Director) brought her what was probably a Christmas message mailed to her. We did not see it. But she said it was from Marion--which one?- there is a cousin Marion, and a granddaughter, Marion)

I asked about her appointment with the doctor: "I thought you were going to the neurologist on Monday."  No recall at all. End of subject.

 Mom said that Tom, Ivan and Bob (Their late husbands) were going to get together this evening, and the ladies could do something else. As usual, we agreed that sounded nice.

And her grandma and some other older ladies were going to get together--again, that sounded like a nice thing to do.

I commented that I noticed she was wearing her stockings.  She said she put them on, (did she?) and "Sometimes the ladies here want to put them on me," meaning the caregivers.

Norma was pleased to show us a little plastic crib scene she had painted. That was definitely a pleasant experience.

Scrabble was fun, with  Mom winning. Connie usually keeps score, bless her heart.  We did use the Scrabble dictionary to be sure of two things. Sox is okay.  Vy is not; vying, okay, vie is present tense.  I'm grateful for that little book.

Sometimes when we start to play, Norma asks how many tiles we use. Seven,of course.  Later, she might have 9 or 10 tiles. "It's okay, you can use as many as fit on the board (little  individual holders)."  As we again differed on the score--counting, with me stating what the rules say, there is scorn for anyone who keeps to the rules. When she questioned the rules, I told her I had a typed list of rules, so she read the pertinent ones. But still whatever she wants to do is fine.I don't know if that is old habits or new confusion. No one gets loud; we just don't pursue it.

Norma is still  good with making words,but not so quick with counting score.

Today there were several references to a living Tom; I kind of envy that. We never correct that kind of hallucination.

 

It seems that this morning Mike Manning came into her room with a lot of clothes she did not recognize. He set them on her bed; she would not let him put them in her dresser (don't know if he was going to).  About 2pm someone came in with food,  and she did not need any. (No idea there; we did not ask the caregivers.)

As Connie and I donned our coats--after 3:30--Norma put on her jacket.  Connie and I reminded her that we are not relatives, and cannot take her out of the building.  She said I could tell them I'm a  sister-in-law, but I told her that would be a lie. She looked serious, so I hustled out, after a quick kiss on her cheek; Connie did the same, and we walked fast after catching Sergio's (a caregiver) attention, and asked him to help if Norma insisted on going with us.  He just smiled.  I thought I heard Norma's voice, but it was not loud.  Don't know if she actually started after us or not.

Since the hallucinations are real, Norma does not appear upset or confused.  Today was a bit more than other times.

I asked Jean if I could use this as illustration of what others see with Mom.  As Connie and Jean see her regularly, and have known Mother for more years than I have lived, they can surely see the differences.  

I truly appreciate their help and time with Mom.  It really does make so much of a difference!  

Thank you, Ladies. 

Gift Giving for Dementia Patients During the Holidays

Christmas Time is one where people feel more generous, typically.    This can make it somewhat difficult in determining what to buy their loved one as a gift.  It needs to be useful; it needs to be nice and pleasant; it needs to be safe.





Trying to create a list for Mom during this time is slightly stressful.  What could she use?  Probably some new attire.  But, what size?  color?  what would/could she use?  Would she remember it as being hers? or would she think it was misplaced in her drawers or closet, and then try to give it away?

Looking back over the past year, and the attempts made to give Mom gifts, reveals these challenges.  Last year I bought her towels to trade out with the ones she already had.  She'd forgotten they were there, and had stuffed them in a cupboard.  I took them out and she rejoiced in having something new.  Despite the number of months between December and July, the gift was good (whew!).

She also received a small stereo that played cd's.  She still hasn't a clue how it works, although five years ago she would have used it a great deal (her own stereo at home had a 5 disc carousel that she changed out on a regular basis, and knew how it worked with no issues).  So, the only time she has music is when someone else puts some on and hits 'play'.  It's still a good gift, because it is useful, and brings her enjoyment when she does use it.

She was given a blanket, last year, but it's not been unwrapped from it's new condition.  It remains in a cupboard, and she demands it not be touched.  Books aren't really a choice, either, unless she really wants them.

And, Mom doesn't take baths, as it means someone needs to be present in case she isn't able to get up and out.  She hates that she's being watched!  So, bath stuff is kaput! as an idea.  And, she's never really donned perfume or cologne, and has allergies to most skin care (except stuff with Dead Sea Salts - hint hint hint).

Going through the pamphlet on Holiday Tips for the Caregiver from the Alzheimer's Association, I found some ideas that make sense, and others that made me recoil.  A hot pot?  I think not.  Coffee pot?  ditto.

But, here are some ideas that make great sense for Mom, and, perhaps, others in her situation:

Bird Feeder and bird seed- for outside her window.

This would allow her to gaze outside and enjoy the feathered beasts.

Music - Even though it doesn't seem as though she experiences it often, it may be more than we realize, as we're not with her 24/7.  And this would please her.






Stationary and Envelopes, with an address book that has everyone's information - in case she wants to make the attempt.

Gift Cards -
for Macy's, Nordstrom's, or any store in her area for her to go out and pick clothes and try them on...Just for the experience.









Photo Albums - of pictures from her past with friends, and family.









A Calendar for her wall - something she can utilize to tell the day/date.  Although it may not work, she'll like the pictures, hopefully.








Candy, Cookies, Cakes - Mom loves all holiday candies.

I'm going to be baking for her and putting things in tubs, doling them out to her in small doses - otherwise they'll vanish in a flash!


Flowers.  Mom loves flowers.







Books - This is tricky, as Mom doesn't recall what she's read, so it makes this something of an ordeal.

 She also needs to have interest or purpose with the reading.  And, here,  a gift card to B&N, Powell's, or Amazon simply won't work... Drat (this used to be the easy one).





To be honest, Mom's recollection of the day will not last, nor will her memory of who gave her what.  Yet, I want to believe that something inside of her (be it an alien working some out-of-whack controls as in Men In Black) is aware that she was remembered and given something.  I also know her history of acknowledgements is shaky, but at least it's something we've thought about and shown we still care. 

Update Central - A Visit With The Neurologist

Earlier today, we went to Portland Adventist to visit with Mom's neurologist, Dr. B.  What a nice guy.

Unfortunately, though, even though we'd taken all the necessary steps last summer to obtain all Mom's medical records from the clinic in Port Angeles, they were never sent.  So, that became task one.

Next came the consult.  While Mom was having her blood pressure and other vitals taken, Dr. B. and I went into his office to chat.  My concern was her weight.  She's gained nearly 45 pounds in the last year, and there seems to be nothing that keeps it from going up.  Why?  Aha!  It's the Quetiapine, aka Seroquel.  Unfortunately, we cannot stop her taking it, as it helps with her hallucinations and her anxiety.  And, she's on a small dosage, as well.  <sigh>

Mom has been more confused, of late, but there are still windows of lucidity, but nothing compared to where she was the last visit.

I also asked the doctor if there was a timeline.
"You mean, how much more time she might have?"
"Yes.  What can we expect?"
"Well, it doesn't appear that she's circling the drain.  Your mother is in pretty good condition, physically, so with all the problems that will creep up due to the disease, depending on whether or not she develops a heart or other condition, I'd say you've got a fair amount of time.  Now, with the abilities she still has?  That might be going down at some point in the next couple of years."
"She also been experiencing Sundowning more often."
"Well, you can expect that to happen more frequently, now.  She's progressing, and from what I've seen and read, this will only grow worse."

Reality checks aren't necessarily for the meek.

He ran some tests on Mom, and gave her an inventory to assess her awareness.  Mom was a bit more lucid, but there were still telling elements.

He also had her perform some physical tests.  She was 'Showtiming', where she walked better than I'd seen her in ages!  She walked as though she was modeling clothes!  Harrumph!

All in all, though the visit was good.  She was exhibiting more Parkinsonian traits (obviously more visible to him than me), and he noted the lack of movement ability in her legs and arms.  She was stiffer today than at the last appointment in June (this was my observation which he affirmed).

He did have a chat with her about weight gain, and the need to be more cautious about what she was eating.  This could prove to be a health risk in the future, he stated.  She smiled and acknowledged him.

So, as we left the office, she turned to me and said, "I'm hungry.  I haven't eaten for quite some time." She had had lunch less than 2 hours before.

So, I figured a small snack.  We ended up at IHOP, where she downed a Rooti-Tooti Fresh and Fruity stack of hotcakes with bacon, and iced tea.  Yes, I feel guilty.  But she wasn't going to eat much more today.  I doubt, seriously, that she would eat much dinner - but then, you never know.

So, all in all, it was a good visit.  I'll check the portal later in the week to see if there's anything to toss around in my head, but I feel as though she's in good hands with him.  And, she really likes him, which isn't all that common with Mom and doctors.

The Week Ending 12/14/2014

This week was a mild one.

Mom had no visitors until today, but she was still able to do her regular things, like Bingo, and other activities set up at St. Anthony's.

Unfortunately, everyone had events this week, and for the RLC the wind storm didn't help, either, what with the power outages, and all.






Mom received two Christmas cards which I left with her in the evening after dinner.  She was quite happy with both.  She read to me another she had received, but I fear it came another time, perhaps a year ago; it still gave her a smile.

Tomorrow, Mom gets to see the neurologist at East Portland Neurology, for the second time.  This will be an interesting follow up.

This evening, Mom stated that her week had been quite stressful.  In fact, as we arrived at St. A's, she told me she really didn't want to go into work tomorrow, as they expected far too much from her as they were just incompetent (which job or to whom she was referring is somewhere in the ether).

She was just a tad demanding, but very much out of sorts.   At one point she asked where Dad had gone (meaning he had just been with us).  I told her he needed to take care of some things and would rendezvous with us tomorrow;  she found this a bit tough to swallow, but kept it to herself.

She was rather confused this evening, and rather than committing her to conversations where she was making statements that were not with an awareness she needed to actually participate we were able to redirect her to small talk.  However, she still had an opinion on much that was said - even if they were completely off mark (making her confusion and her reality much more apparent).

ON the way home she wanted to give driving commands.  I'm so happy she's no longer driving!  Red lights are just bothersome and needn't be followed if she wants to go.  She also tried to get me to change lanes on the freeway, even though we were approaching our exit.  Even when wanting to take the freeway all the way out to St. A's, she thought it silly and stupid of me, as the street roads would be quicker, in her opinion.  Luckily, though, I kept breathing and smiling.

She even had an opinion on all the wasted space of buildings she saw as we went over the Marquam Bridge.  And then there was the comment about how safe the bridge was - and then I said it: "Well, just pray there's no earthquake.  That would stop us both from feeling very safe!"

"Well," she replied, "if someone wants to be silly enough to do something like that when they aren't really equipped mentally and physically, then they should probably go find another job."

See?  This is what is meant by my days can be a merry-go-round.   But, aside from her asking why we didn't bring her car tonight ("Did you leave it at your brother's when we left?"), she determined that we could pack a lot more things in my car (I really need to get back to my wonderful home in Port Angeles and take a nice, hot, bath!")

Upon leaving her she was getting ready for bed and taking her medications.  All was well, again, for her, and she'll, most likely, dream a new reality in the next several hours.  

Dementia and The Holidays

The Holidays have arrived!  It's official.  It's Black Friday and all the little elves are busily shopping to their heart's content!

But What About Mom and the Other Dementia Patients?  What Do The Holidays Mean For Them?

Going by past experience (the past 3-4 years) and what Mom has done/not done, and her awareness of the holidays, this one feels a tad hollow; not that there is nothing there, but there is a tug that demands attention for  something that may not exist - at least not completely.

The first year she was confused about being in her own home, and couldn't wrap the gifts.

The second year she never went shopping for gifts despite many opportunities, stating she'd rather go the following day (and so it went each day).

The next year she was in Memory Care, and it just seemed to bypass her thoughts and awareness.  She did like the gifts she received, but wasn't aware of the absence of hers to anyone, which was becoming the norm, but in the past this would have been quite odd.

Her receipt of gifts was a little confused, and she knew she had things, but lost the tracking of what they were for, from, and to actually use them.  So, for all intents and purposes the list this year will be on things that will affect her daily life without her actually realizing they had been given (towels, bathmats, something along those lines).

With celebrations this is now a different story.  She used to enjoy a bit of a crowd - in her younger years.  Today when there are more than 5-6 and several conversations going on she has a bit of a panic.  She's not tracking one from the other, and becomes confused.  This scares her and tires her out.  It also makes her feel left out.  She appreciates the company, food, drink, and attention - but if it seems, to her, to wane, then she's done.

Later, she will not remember much of it, but the event will have brightened her a bit for a few days.

It's interesting to note that even in July she was thinking about how it was nearly Christmas and she needed to get some shopping done;  this thought vanished in moments, though.

I suppose the note of this is that the spirit of the holidays is present with us, and how we involve Mom, as do others, is important, but the take-away is more for our spirit.    She loves the season, but is growing less aware, but the twinkle in her eyes when she does realize makes the magic of the season.

Medications - How To Get Patients To Take Them

Mom, with her LBD, needs to take her medications.  She doesn't like them, and many times she doesn't want to.  However, she must.

I'm not sure how they handle it at St. A's, but I believe they hand them to her and wait while she does.  This is also with a glass of water in hand, which is easily refilled as she ingests.

When I have the medications, she wants to know what each is for.  So, I tell her.  The first one is for her (back) pain (or any other pain she's experiencing at the time) - that's the Vicodin.
    The second is for her eyes and to help stave off the macular degeneration - that's the Selenium.
    The third is for her anxiety, and to keep her calm and able to think clearly (this is the hardest one to sell) - that's the Quietepine  (aka Seroquel).

Now, Mom takes but three during the day.  In the morning, she also takes her Vitamin C and her pills for her blood pressure.  The VitC's are gummis, and she chews on those.  They're enjoyable - almost like candy.  Before, though, she had a terrible time swallowing the pills, even after they had been cut smaller.  So, the gummis work quite well.  I'm sure if we could find the other medications in that form they would go down much more easily!

The blood pressure medications she takes after they tell her what it is.  She may tell them she's healthy and doesn't need it, but take it she does.  Whew!

About a year ago, though, Mom had to take so many different pills after visiting the Optometrist.   There was an entire regimen of minerals and vitamins (over $100 worth) she needed to ingest just to keep the macular degeneration at bay.  Then the doctor told us just to take Accuvite, which has everything already in it and it's much cheaper!  So, Mom went from taking about 16 pills in the morning to about 7 (the gummis account for 4 of those).  Much better!

I also realize there are others who have troubles getting their loved ones or patients to take their medications, and aside from just handing them to them and waiting, there has to be something else.

If you're still interested in more reading on the topic, I've listed a few sites below for reference.  Good Luck!

When Dementia Patients Refuse Medication

Refusing To Take Alzheimer's Medication

How Do You Get An Alzheimer's Patient to Take Her Medication?

What To Do When Patients Refuse Medication?

Helping Alzheimer's Patients Take Their Medications

Interesting Points of Thinking Interest - The Week Ending 12/7/2014

 How Delightful Her Royal Highness was this morning!

I came in to find her gazing and observing others over her coffee.  She was happy to see me (and why not?!).  So, we began with the 'putting on of the stockings' routine.

Now, I'm not sure I've described this before.  Mom sits in her recliner, then waits for me to remove her shoes and socks.  Next, I am to put on her stockings, one at a time (if you can do two, you aren't normal).  Her feet tend to be quite relaxed, which makes this task difficult - there is no help from her at all, and all the while she's dictating to you how to do it properly (and this doesn't always make any sense).  Next step is to get her to elevate her feet on the footrest of the recliner.  Phew!  Now, once that's done, and you've put the stockings on, she wants me to fix her pant legs, put on her shoes and socks, tie them, and adjust.

Well, this morning I went to  a point in all this, then finally exclaimed, "My dearest Victoria Regina.  Surely there must be a small simple part of you that would enjoy taking care of those things yourself."  She laughed and replied, "Why should I when I have you doing it all?!"  Sigh of Exasperation!

This morning we also went on a little walking trip to Laurelhurst Park, in Southeast Portland, near one of our old homes from the 1960's.  Originally we were going to go to Mount Tabor, but when I parked and Mom realized we'd need to walk up a little hill she demanded we go somewhere else.  "I just ate and going up hills makes me terribly queasy.  I'm already nauseous enough.   Find another place."  So, we ventured to Laurelhurst.

The park was marvelous.  It was cool.  On the way there, Mom chatted about how she'd given some pants of hers to Connie and Jean (The RLC) to fix so that they could be given to my brothers and myself for Christmas as gifts.  Knowing this was very much a possibility, I was hoping either Connie or Jean would have appeased her and just put them to the side (Remind me to speak of the Executive Bibs for Xmas).

We walked, looked at the trees - Mom seemed rather upset that so many trees in Portland were dead and no one was removing them!  I tried explaining it was Autumn, and nearly Winter, and she understood that, but then she basically stated that they were dead and needed removing before they killed people.  Sigh.

We looked at the birds.  There was a seagull swimming about, but Mom stated it was a swan, not a seagull, and she explained the bands of grey on the wings as a tell-sign.  This I knew not.  This I still know not.

Eventually we made it back to the car.  She did need to go uphill, which took 4 stops to go 50 feet, but it was worth it just to give her the opportunity to exercise.

Next, we drove by our old Laurelhurst house, but she couldn't recall which it was, but I did.  So, we went off to the house where she was born.  We couldn't locate that, either.  We then went to another house I remembered, near 60th and Fremont.  She still drew a blank.

Next we drove down to Jean's house for lunch.

Mom told me about her week, as we drove.  She did play Bingo, and she won (of course)!
She'd had her toenails done - just clipped, though.  She stated she didn't want her hair done, yet.  She wanted to wait until next month when she was back home in Port Angeles.  Uh oh.

At Jean's, Mom was quite busy.  She took over the small reading nook, and kept Jean engaged while I made lunch.  Finally, we were able to eat.  Mom ate healthily.  She ate the entire salad of kale, spinach, scallions, tangerines, mushrooms, tomatoes, orange peppers, olive oil, and balsamic.  She ate the pineapple and Canadian bacon pizza.  She loved the pecan - chocolate cream pie, as well.

A little later, Terry (Jean's son), and his daughter, Jaida, appeared.  Terry wanted to talk about the State Playoff Football game the day before, as my students played against his alma mater.  It was a good chat.  Mom had a very good time, as well. She was quite engaged.

We finally left, with Mom feeling tired but happy.

She did well this week, except that she's somehow managing to refuse to do certain things which are calls for concern.  These are things I'm going to investigate this week.

So, Stay Tuned!

Phases of Lewy Body Part II - The End of the Non-Scientific Foray (for now)

So, in the last post, I spoke of what have been the beginning phases through what we have at this moment with Mom.

Here, I will post from what I have read and heard from other sources what we will eventually expect.

Remember, from diagnosis to the final 'Hurrah', it can be from 3-7 years on average.  So, watching Mom decline as quickly as she has in the past several months has prompted me to brace for whatever will be.

So Here Goes:

PHASE  FOUR:
Mobility Issues -
As the dementia kicks in stronger, there will be more mobility issues which begin with a stiffness to the upper body and coursing downward through the limbs.  This will also affect balance.

What does this mean?  It means that as the disease progresses throughout the cerebral cortex, and moves its way through the other portions of the brain, that there will be more occasions where Mom will fall.  Eventually, she will begin needing a walker if not a wheelchair/scooter.

There is also the "Lewy Lean", which I've caught occurring with Mom, where she has troubles keeping her head held up.

PHASE FIVE:
The Lack of Lower Body Function/Control -
With the mobility issues, there will also be the onslaught of issues with the need for diapering.  This, I know, will be a humiliation for Mom.   However, she will need to keep her dignity in most settings, and use these as a barrier from what could be even worse.  I believe you can catch on to the idea I'm setting out there.

PHASE SIX:
Inability to swallow -
Eventually, the ability to swallow and to be able to eat normally could very well become a norm.  As the bodies move through the brain this dilemma will become more commonplace.  There was a time where it seemed Mom was having issues with swallowing, but then I saw the pills and understood her problem.  However, at times this does seem to creep in little by little.

PHASE SEVEN:
  Capgras (Caw-Graw) Syndrome.
This may occur as she dives deeper into the dementia.  This is where she recognizes people but has the suspicion they are imposters.  Nope.  Not happened yet - just forgets she's speaking to me about me.  Not sure who I'm supposed to be at the time - she won't tell me.

PHASE EIGHT:
Shut Down.
  This is the final stage.  This is where the bodies have taken over the brain and have begun their final stages of 'victory', where the cells can no longer function and the body systems go awry and then go dark.

As with all dementia, Phase Eight is the End of Life.

Lately, however, Mom has had a spark about her, even a bit of wit.  She doesn't seem as tired as before, and seems, too, to be on a better playing field.  However, this also tires her out.   But, the fatigue of not sleeping seems to have been held at bay.  How long this lasts, I've no idea.

To Be Frank - These stages are purely hypothetical for every patient.  They could occur at any time, sometimes simultaneously, or in tandem with others.

There are no scientific or longitudinal studies that demonstrate these phases, but it's simply from qualitative data I've gathered and observed.

Perhaps in the next 10 years there will be something that suggests a better and more definitive expectation; however, as this disease falls on a spectrum, somewhere between Parkinson's and Alzheimer's, and can take on signs of both depending on the patient, it's probably going to be quite sketchy.

I hope I did this right....

Phases of Lewy Body Dementia - According to a Very Knowledgeable Source....Me.

Doing much research on LBD and trying to figure out what lies ahead for our dear Mama has been eye-opening, but also a little frustrating.

You see, there is nothing definitive about the disease that really lets anyone know what to expect next.

At a recent support group someone mentioned that there was a doctor who had defined 'phases' of LBD.  I can't seem to locate anything remotely connected with this topic, so I've had to try to figure this out on my own.  Rats!  It's so much easier when there's someone who's already done the work....

So, here goes what I understand and what seems to fall into place with this disease:

PHASE ONE (According to me):

       Confusion, Mild Hallucinations, and Lapses of Memory.

    These can be seen as benign signs of the aging process.  Who doesn't have a story about their parent or loved one who gets 'dingy' at one point or another.  Yes, we all have those moments, but with the Dementia Patient, these seem to happen a bit too frequently and, many times, are forgotten (this could be seen as trying to forget the embarrassment).

      Mom took a nap one afternoon and slept rather well.  When she awoke she looked at the clock and outside.  It was mildly dusky but she mistook it for dawn.  She dressed herself quickly, ate some cereal and hopped into her car.  She believed she was late in picking up a friend, in the next town over, for a hiking expedition with their group.  She saw the darkness falling, but thought they might be rain clouds, so didn't give it much thought.  When she arrived at the friend's home she knocked.  Her friend answered the door and said, "Norma!  What are you doing here?"    Mom replied, "I'm here to pick you up for the hike."    Friend stated, "That's tomorrow morning.  It's 9:00 at night!"Mom, though embarrassed, excused herself laughing.  She drove home and tried to get her thoughts together.  She did call me and told me about it the next day, but was afraid someone might think she was losing her mind.  

There was also the concerned call of her best friend, as Mom had her mail all over the dining room table - which was terribly strange.  Mom opened her mail there, then tossed the odd parts out, and dealt with the meat of the mail at her desk.  But this was a jumble.  Mom had also phoned to tell me she was having issues and couldn't figure out why her mail was piling up.  This was definitely a sign. 

Hallucinations also camouflaged as confusion exists, as well.  It may seem a bit odd, and it truly is.  As Mom couldn't recall which house we were dining in one day (we were at her home in Port Angeles), and thought we were in her old home in Portland, and then in mine.  She laughed when I corrected her and she tried to cover it up.

PHASE TWO (According To Me):

   Heavier and less benign Hallucinations and Confusion. 

        Mom began calling in the mornings and during the day asking for Dad's phone number and for that of my grandmother's (her mom).  I recall one evening when she broke down sobbing because she was having an awful time reconciling herself to her mother's death.    This went on for some time, and she was phoning my brother just as often.   

She would also phone me several times with the same message.  Then I'd return the call and she'd tell me again.  

She also phoned one brother 13 times in 2 days, but never left a message, and, I believe, spoke to him at least once.  I spoke to her about this and she stopped.  

Then there was the call about my grandmother wandering off.  Mom wanted to phone the police, but I explained to her they would take her away, as her mother had died, and wasn't truly with her, but in spirit.  She seemed to calm down.

The next days she called to say she'd been kidnapped, but had escaped and was hiding out; she was being held hostage in a home not her own; she'd been moved to Portland overnight - and then back again; She had driven to Astoria in a little more than 15 minutes (now, she was a fast driver, but making that 3.5 - 4.5 hour drive in 15 minutes?  Blimey!).  The list continues.  

PHASE THREE  (According to Me):  

    Physical Rigidity and Symptoms of Parkinson's-like tremors, etc.

   Now, these can happen at any time during the course of the disease.  Some patients develop these earlier than others.  I believe that the Physical Therapy and Massage have helped stave these off for the time being, but Mom just let her Massage Therapist go, so it's a matter of time.  

    Mom has complained of stiffness on her right side, and I've seen her hands begin to tremor without warning.  She shuffles her feet, and with more walking this subsides, but after rest it begins again.  Also, her endurance is far from what it used to be - but this was waning in the past 5 years, 

       There are stories of those who, aware of their plight with this disease, do as much as possible while they still have the ability, and know what is to come.  For Mom and the family, this was not the case.  It was simply a slowing down over time, with some falls.  Mom fell a couple of times - the last she got her face and hands.  The time before she slipped on her driveway and damaged her hip.  

    According to one reliable source, Mom can go to something like a bull-in-a-china-shop, and hit things on the way (believe me, this is Mom).  There is also the ability to fall.  Eventually, there will be times when she will just fall over (or so they tell me) and won't be able to maintain her balance very well.  But, for now, Mom seems to be pretty aware of herself balance-wise, and takes my arm when she feels it necessary. 

So, there I leave you with this.  On Thursday I will have attempted to carry on with more information about the Phases.  It's not, actually, a door I wish to pry open (the later stuff, that is) but to be fore-warned is to be fore-armed.  

Till then!