Monday, October 27, 2014

Two Week Hiatus

I'm taking a short, two week hiatus from Dementia Be Damned.

I've mentioned before that I've spent time as a foster parent.  I may even have mentioned that my youngest is my former foster child who we adopted when reunification with the birth family was no longer possible.  I believe I've noted similarities between my child's PTSD based behaviors and Lyn's anxiety driven behaviors.

What I've not previously posted is that my child has abuse related memories which are triggered by the seasons.  When you experience trauma and a memory is laid down by your amygdala, you may react to the sensory stimuli which you experienced when the event happened when you experience the stimuli again in the future.   Imagine if you were in a bad car accident.  You might find yourself having an anxiety attack when you next come to the intersection where the accident occurred.  You may find ways to avoid that intersection because you associate it with a terribly frightening moment and you may fear another accident in the same location.  Well, the same basic thing happens to abused children.  However, their sensory stimuli may associate the event with a season because they may not even know what a calendar is yet.  They may recognize that the very bad thing happened when the Christmas tree was up or that the very bad thing happened when the swimming pool was in use.

Late October to mid-November is the hardest time of the year for my youngest.  We're 6 years out from the events that made Fall a time of fear.  My child is having a harder time this year than last.  The good news is that kiddo does a great job at school even during this time of year.  The bad news is that it all comes out at home.  It is taking more from my husband and me than it has in a very long time.  Because of that, I am going to take this week and next week off from blogging.  I need to focus on my kids; particularly my youngest.

Thank you for your understanding and your patience.

Friday, October 24, 2014

Tending to Her Teeth

For the past couple of weeks, Mom has noticed that Lyn's teeth are not very clean after she returns from brushing them.  If Mom questions Lyn, Lyn gives a hostile response.  Mom would send her back and ask her to do it again.  Lyn's responses indicated that she was covering her inability.

After a few times, Mom realized that Lyn wasn't using her electric toothbrush.  When asked about it, Lyn told Mom that the toothbrush was making a sound and she didn't want to use it any more.  Mom checked the toothbrush and it was working fine.  "No!  That sound!" Lyn was emphatic and the sound was just the regular operation of the device.  Lyn no longer remembered how the toothbrush was supposed to sound and she was trying to manage with just a manual toothbrush.

Mom had a dental appointment scheduled this week and the doctor asked how Lyn is doing.  Mom told him of Lyn's reduced ability to bush her teeth since he last saw her a few months ago.  He went to his office and came back with an Oral B electric toothbrush with Smartguide.  The Smartguide will tell Lyn where to brush and how long to brush here.

The hope is that the automated guide will give her the additional assistance she needs.  There will come a time when it no longer works for her and Mom will have to brush her teeth for her.  However if this new toothbrush helps, then it will help her keep this small independence a little longer.

Thursday, October 23, 2014

Increase the Risk

In today's news, I read that contracting herpes simplex increases the risk of developing Alzheimer's in later life.  The most commonly recognized risk factors are age, genetics and family history.  However, I regularly read speculation on other interactions which may increase the risk of developing the disease.

The list now includes:

The good news is that aluminum has been removed from the list.

What this tells us is that Alzheimer's is a very complex disease involving multiple systems in the body.  Each one of those risk factors can be the focus of scientific investigation which may lead to another piece in the treatment puzzle. Some of the factors listed above can be mitigated by changes in how we care for ourselves.  Some we cannot change.  While I can work to reduce my BMI, changing my gender at a genetic level really isn't an option.

Wednesday, October 22, 2014

Respite Reduction

The sun is setting earlier in the day and Lyn's Sundowner's has come back with a vengeance.  On Monday, when her respite provider brought her home after dinner, Lyn was very upset.  There was nothing in particular that her respite provider or another person had done to upset her.  She was upset because she wasn't sure how to express her fear and anxiety that they were someplace unknown or that they were lost.  She just wanted to be home where she feels safe.  It was her respite provider's first real exposure to Sundowner's.

Mom and I had anticipated that this would happen and knew it was a matter of time.  Mom had suggested that we may need to reduce the number of evening hours Lyn is out with respite during the shortened days.  When Lyn came home Monday, Mom made the suggestion to her respite provider and the suggestion was readily accepted.  It is not that we want to reduce Lyn's time out and about.  It really comes down to asking if it is the right thing for her to be out if she's just going to be anxious and acting out of fear.  The Saturday respite hours will remain in place.

When Mom spoke with Lyn about it, she asked if Lyn knew what Sundowner's is.  Lyn did not.  Mom explained that when the sun sets the lights change and it seems like you are in a different place.  Lyn said "That's what I see every night."  Mom talked to Lyn a few minutes more and told her about the time that they were on the way home from dinner with Grandma many years ago and Grandma said "I hope you know where you're going."  Grandma didn't recognize that they were just a mile or two from home and thought they were in Santa Fe.  Lyn found the story funny though she didn't remember that event.  Mom explained that because Lyn gets anxious in the evenings, she didn't have to go out.  Lyn relaxed and said that was what she wanted.

Lyn has struggled with Sundowner's for years.  However, she's reacting to it much more strongly than she did even a year ago.  There are tears that are now accompanied with verbal lashing out and what can only be described as hatefulness.  It is all fear, really.  We don't want her to feel so unsafe that she physically lashes out.  She has not and we would like to avoid that.

We don't know if she will be able to resume more respite hours when the seasons turn and the days grow long again.  She might.  However, her brain changes over the course of 6 months is significant and we're at a point where it is very difficult to predict how much she can tolerate that far out in the future.  So, for now, her respite will be limited to daylight hours.

Monday, October 20, 2014

Reminiscence Therapy

Reminiscence therapy is the use of life histories to improve a person's psychological health.  Using pictures, video clips, objects or the written word, an individual can evoke a deep memory from an individual with dementia.  In order to help trigger the memory, the stimulants should be representative of or from the time of the individual's younger years.  For example, while you may not have pictures of the person as a child, pictures taken in the area where and from when they grew up may be familiar enough to cause a memory to surface.  During a therapeutic period, the person may not talk about the contents of the stimulus; but may discuss other topics which are connected emotionally for that person.

Reminiscence therapy benefits a person by getting them communicating and focusing on positive associations.  Making a connection and sharing their thoughts helps the individual feel valued.  The conversation itself can be interesting and funny and who doesn't like a good conversation?

Lyn has several photo albums that she used to go through fairly regularly.  While she doesn't much anymore, she will go get one and sit with you to look through it.  Looking through pictures of Albuquerque from the time of Lyn's life makes me realize that despite the growth of the city, much of it still looks the same or has enough of the same flavor that picking out the age of a picture can be a bit of a challenge.  Sometimes, we have to look to the type of photograph to help us determine the age of the image.

When you sit with Lyn and go over her photos, I find she doesn't make the connections that other dementia patients may be able to make.  For example, she can't tell you what movie was her childhood favorite or tell you about the time that Mom took us to see Star Wars when it was in the theaters.  A picture won't cause her to think of a meal, a song or even the seasons.  She might, on rare occasions, think about someone who is not pictured.

This difference is really nothing new with her.  While she enjoys music, I cannot remember a song that she felt a strong emotional connection.  I really think her inability to express connected memories is a result of how her memories were stored through out her entire life and not a result of her Alzheimer's.

Friday, October 17, 2014

Thursday, October 16, 2014

A Question of Guilt

At some point, Lyn will no longer be able to tend to her personal needs.  She won't be able to change her clothes, feed herself or clean herself.  She won't be able to get up and may become bedridden.  All of these changes are common symptoms of the late stages of Alzheimer's.  When that time comes, Lyn will need care providers who are able to lift her, turn her, feed her, clothe and clean her.  Because of Lyn's size, Mom may not be able to do it all herself.

A comment on yesterday's post raised this concern and the very real possibility that Lyn will need to be placed in a care home.  The goal is to keep Lyn in her home environment for as long as possible.  Her case managers have spoken of making in home renovations such as a walk-in tub to make her care as easy as possible for as long as possible.  While that goal guides decisions about Lyn's in-home care, the reality is that Lyn will very likely need full-time nursing care.  Mom and I are cognizant of this need and are emotionally prepared to make the decision when the time comes.

The comment posited that we may feel guilt in placing Lyn in a nursing home.  It raises a good question.  Will we?  Mom and I discussed this topic last night as a result of the comment.

When my Grandmother's care exceeded the capacity for her to be cared for in-home, Grandma was moved to a small private nursing home where she lived until her death.  She received very good care.   It was the right place for Grandma and we'll always appreciate my Aunt suggesting the facility.  In thinking back on that time, I don't remember there being expressions of guilt in moving Grandma to a nursing home.  Mom confirms that there was no sense of guilt felt or expressed.

As we continued the discussion, we found we were both expressing much of the same sentiments.  When Lyn is placed in a nursing facility, it will be with the recognition and knowledge that her care has exceeded what can be provided to her in the home.  We will make sure she's in a good facility and Mom anticipates visiting her regularly if not daily.  Neither of us expect that we'll feel guilt or question the decision to move Lyn because our goal is to provide her with the best care we can provide.  If that means that others have to do the heavy lifting then we line up the resources Lyn needs.

If we were just placing Lyn in a nursing home because we were tired of caring for her, then we'd have reason to feel guilt.  If a nursing home was a matter of convenience and not need, then we'd have reason to feel guilt.  Moving her when her care exceeds our abilities is no reason for guilt.

Mom and I both have participated in Alzheimer's support groups.  Mom has attended in real life as well as on-line.  I participate on-line only at this time.  Neither of us have understood the feelings of guilt that are commonly expressed by other participants.  When we hear of the lengths to which others have gone to avoid a nursing home placement, we see nothing to fault with their decision to finally place their loved one in a nursing home.  The decisions are not easily or lightly made.  While it may not be an easy decision for us too, I do believe we will accept the decision peacefully and not beat ourselves up over it.