You’re probably wondering why it’s been so quiet…

It’s quiet because all is well!  As expected, it took awhile to get Mom truly settled in to her new home but eventually she settled into a routine of some sort and the aide who cares for her most became used to her habits and idiosyncrasies.

That’s not to say that every day is peachy keen.  This last full moon was a doozy as far as the effect on all of the residents.  The confusion and behavior became quite comical at times – it’s best to laugh rather than dwell on the fact that their once wonderful minds are slowly leaving them.

The week leading up to the full moon found Mom alternating between grumpy and downright crabby.  Each time I walked in and asked how things were going I learned that Mom had been a handful.  Tina lays out Mom’s clothes each day but Mom is still able to dress herself – for the most part.  There was a day that Tina had to send her back in three times to get it right and Tina finally went in with her to help.  Ten minutes after getting the clothes on correctly, Mom went back in her room and changed the clothes all around again.  J

The day of the full moon was a treat too!  I didn’t visit that day but my sister and my niece did.  Mom refused to put her teeth in and kept insisting that they weren’t her teeth.  Tina was not working that day so I promised to take a look at it the next morning.  It was doubtful that they weren’t her teeth but given the full moon, you never know.  I’ve watched the aides pull all sorts of personal items out from under the couches and chairs and I’ve watched them searching all the rooms trying to find a resident’s glasses or some other item.  In fact, Mom’s is one of the rooms they always have to search!

I walked in the day after the full moon and Mom was practically wiggling from head to toe, she was so happy to see me.  It was easy to see that she had her teeth in and yes, they were hers.  So at that point I just chalked up the teeth issue to the full moon.

During my visit, I happened to get a side view of her face and noticed that all around her right eye was puffy and red. She wasn’t complaining or rubbing it and it wasn’t noticeable when you looked at her because of her glasses. I also noticed Mom was coughing a bit. I thought nothing of it at the time but later in the day it dawned on me. Mom had complained about her teeth because she was having a sinus problem with the weather change and it made the bones in her jaw hurt.

If you look real close you can see the redness around Mom's right eye.

I alerted the home to the possibility and the nurse checked Mom out.  It was just a little pink at that point so the nurse gave Mom some Claritin and said she would keep an eye on her.

So, yes, there are blips, but all in all, it’s all good.

It’s probably good she is farther away… AKA Stay away when you’re sick!

I’m missing Mom right now!  I haven’t seen her since last Tuesday – almost a week!  Usually I see her two times a week, sometimes three, and I visit for a couple hours.  I’ve stayed away since last Tuesday because I just didn’t want to take the chance of spreading an illness to her or any of the other residents.

Some things don’t stop me from visiting.  I hurt my back the Monday before Thanksgiving but I still visited.  When my husband came down with a cold or infection of some sort after Thanksgiving, I visited last Tuesday because I had no symptoms and we were being careful.

My next visit was to be last Friday but I received an early morning call that my littlest grandson was not feeling well.  God must have been watching out because I started having headaches that day – not caused by my little Hurricane J - and by Saturday was well on my way to the same thing my husband had.  Here I sit today, still not 100% but hoping that later this week I’ll be in good shape to go.

I’m especially sensitive to visiting if there is a possibility that I am ill because many years ago, I worked in a nursing home as a dietary aide.  I loved my work!  I helped the cooks prepare the meals and kept everything clean and neat for them.  My favorite part was serving the residents – knowing each one’s quirks and favorite foods and joking with them as I made sure they enjoyed their meal.  After the meal it was my job to wash the dishes and put them all away but industrial dishwashing equipment made that a fun and easy chore too.

So what does that have to do with spreading an illness?  There was a day during my time there when a cook came in with a stomach virus.  She should have stayed home and certainly should not have been handling food.  Within one week, three of the most vulnerable residents passed away after having symptoms of a stomach bug.  I can’t say it was the cook’s fault because the bug was going around and visitors were coming in and out all the time.  All these years later, however, I still remember that lesson.

So, in this case, I’m happy that Mom is farther away because if she was close, I would feel that I had to see her every day because no one else would be close.  And I’m happy to say that, while I have not been able to visit, our very large family has more than made up for it!  Mom has had MANY visitors this past week!

Two of my grandnieces take Mom and another resident for a walk.  It makes me SOOOO happy!

Sometimes I wish Mom was closer…

When we decided to move Mom out of our home and into an Alzheimer’s facility, location was a question.  Mom had lived with me for a year but I live a little less than an hour away from everyone else in our family.  Although Mom wouldn’t know where she was actually living, by placing her near the rest of our family, I had hoped that there would be more opportunity for visits.

Mom does have visitors – in addition to my regular visits, my sister stops by at least three times a week on her way home from work and there are others that stop now and then too. 

Truth is, though, when dealing with Alzheimer’s and dementia, there comes a time when you begin to feel that visits don’t mean much.  If you’re lucky, your loved one will recognize you when you arrive.  Eventually they will lose your name (Mom lost mine long ago), then they will lose the relationship (daughter, son, etc.) and finally they might lose any reaction to a visit at all.

Early on they are happy to see you and might remember for awhile that you visited even if they can’t remember your name.  As time goes by, you’ll enjoy a great visit only to find that 10 minutes after you left, they’ve forgotten you were there.  That’s when you begin to feel like your visits don’t mean anything.

I can honestly say I haven’t had that with Mom.  Yes, she forgets I was there 10 minutes after I leave but she always recognizes me when I arrive.  No, she doesn’t know my name and quite often doesn’t remember I am her daughter but she knows my face and that I’m there specifically to see her.  Some day that reaction will be lost but even then, I know my visit will mean something.

There is a gentleman at the home, Ralph, that I have watched progress deeper into Alzheimer’s.  Although he is known for cussing and yelling – something my daddy never did – he reminds me of Daddy.  Seeing him brings back the memory of Daddy at the nursing home sitting in his geri-chair. 

At times, Ralph will give me a smile and sometimes respond briefly to my questions.  At other times, he is yelling and agitated and it bothers everyone but the reality is that he is in pain.  They are constantly adjusting his medication to try and manage his pain.  When it’s working, he’s peaceful and naps.  When it’s not, you can hear him all over.  I hate to see him feeling that way so if he is agitated when I am there, I go over and rub his back and look into his eyes.  I think he recognizes my look of concern and he settles into the feeling of the backrub.

Ralph never knew me before I started visiting the home and he never had the chance to know me.  When I’m there, though, he seems to know I care so even though we have no history and no future, that feeling makes me glad I took the time with him.

That’s why I sometimes wish Mom was closer.  I would happily visit every day because I want her to know I care.

I helped Mom put this puzzle together the other day.

It’s best to bounce when you fall…

It’s not unusual to hear from family members that their loved one fell at the nursing home.  I’ve heard it many times and unfortunately, blame is always directed at the home and the staff.  I’m here to give you a different view of the situation.

I have a daughter who has had epilepsy all her life and for about 17 years, she has had not only absence, or petit mal seizures, but also tonic clonic, or grand mal seizures.  She doesn’t have a warning so she is unable to get in a safe spot or position before it happens.  I cannot tell you the number of times that I have been in the same room and have watched as she fell, unable to move fast enough to catch her.  She has suffered far too many bumps, bruises, black eyes and more from those falls.  I felt so badly each time, that I was unable to respond in time to cushion her fall.  That said, I thank God for watching over her because she’s had her share of seizures right at the top of the steps!

While Mom was living with me, I also watched as she stepped back from the window, lost her balance and fell.  I was in the next room and could not get to her quickly enough to catch her.  Luckily, there was a soft footstool and although it didn’t cause the fall, it was close enough that she sat on it rather than falling all the way to the floor.  It stopped the fall but the momentum sat her back into a cast iron quilt stand covered with quilts.  She hit that hard enough to bend the cast iron! 

There was surprise on Mom’s face as she fell but once the movement stopped, she looked up at me with a sheepish grin and then laughed!  I helped her up and kept an eye on her but no bruises showed up, nor did she complain of pain.  Whew!

Last weekend I received a call from a nurse at Mom’s home.  Mom had been in her room looking out the window – by now you know this is her favorite pastime – and as she backed up from the window, she forgot the bed was there and fell.  Tina walked in to check on her and there was Mom, sitting on the floor with her back against her bed and she looked at Tina with a grin and said, “Oh good, honey!  Can you help me up?  I’m stuck!”

The normal procedure for a fall is to keep the resident still until a thorough check is completed.  The nurse was called for Mom and the check found no broken bones or even bruises.  After getting Mom up, her only complaint was that her legs hurt a little – but that is a typical complaint on a daily basis.

Not all falls have happy endings or make for comical stories.  I’ve seen many over the years and a few at Mom’s home.  The falls typically happen when the resident decides to do something that they have forgotten they can no longer do.  They also typically happen when an aide is not standing right next to them.

My point here is that even when I was the 24x7 sole caregiver of my daughter and later, my mom, I was not able to prevent falls.  Why would I hold the caregivers at Mom’s home to a higher standard than I was able to achieve?

Bath is done and I didn’t do it!!!

Handling Mom’s bath for the last month and a half paid off. 

Two weeks ago, her aide, Tina, told me that her goal was to get Mom to allow her to do the bath.  Last week, she joined us as I bathed Mom to get an idea of what worked and then said that she wanted to try this week by herself – without me around – to see if Mom would cooperate.

Tuesday, the day I usually did the bath, I waited to visit in the afternoon.  The bath wasn’t accomplished that morning but, quite frankly, I don’t know how anyone could have accomplished anything!  Oh my goodness!  You would have thought it was a full moon – it was a new moon so maybe the combination of that and the weather could explain it.

Mom had pitched a fit in the morning.  Night shift had forgotten to take her dirty clothes out of her room from the night before.  Mom was up early and dressed in them before Tina arrived that morning.  At that point, Tina was lucky to get Mom in clean clothes, let alone doing a bath.

Mom wasn’t the only one acting out, however.  I found one of the other ladies stripping off her clothes as she walked and she had quite a few harsh words for Tina and Whitney as they tried very kindly to get her dressed again.  Another one of the ladies was singing with us one minute and yelling at us the next.  Two of the gentlemen were up all night wandering around and so were sleeping off and on.  When they weren’t sleeping, they were yelling or getting into things – and also stripping!

I’m sure it wasn’t right but I couldn’t help laughing when Beth, the Life Enrichment Assistant, would try to get the residents together for an activity.  She would get one or two but before she could get another, those first two had wandered off. 

Everyone seemed to be in their own little world and they all seemed to feel that their world was a little off kilter at the moment.

It was comical but I did truly feel for the workers.  Those are the days that they are cussed at, hit and just generally abused.    You can see them getting tired as the day (or night) wears on.  It’s amazing that, in spite of the treatment they receive at times, it’s easy to see that they truly care for the residents and come to love them like their own family.

Wednesday was a new day, thankfully.  Tina set up for Mom’s bath and, other than a few minor grumbles at first, they sailed right through and Mom was a very happy camper.  When telling me about it today, Tina shared that her husband said she had talked about Mom in her sleep Tuesday night.  She thought it was probably because she was anticipating doing the bath – and hoping it went well!

Now that she has one successful bath under her belt, I’m sure my bathing Mom days are over!

Walking in their shoes…

After living through Daddy’s Alzheimer’s journey and learning so much about it from Mom, I thought I had a pretty good handle on it.  I read The 36-Hour Day and learned more.  I’ve spent time on the Alzheimer’s Association forum and other caregiving forums and read lots of information about the Alzheimer’s and dementia and the progression of the disease.  The point of view never occurred to me.

Recently, my daughter who has epilepsy was watching a show on TV.  They were discussing Alzheimer’s and they put some sort of a hat on a person that allowed them to interrupt the electrical activity in that person’s brain.  They then gave the person instructions to carry out.  My daughter identified with the outcome immediately because her absence seizures cause the same type of difficulty in carrying out a plan or following instructions.  As she described the experiment to me, I also identified with the outcome.  Many, many times we have watched our daughter walking around looking much like a pinball in a pinball game – popping here and there but not accomplishing anything. 

For years I cared for my daughter while she dealt with the seizures.  I learned everything I could about it, I went faithfully to the parent support group, and over the years became better and better at handling her care.  The Epilepsy Foundation was an excellent source of information, even providing films and stories from the point of view of people with epilepsy.

So what has been missing from all my forays into learning about Alzheimer’s?  My Mom’s point of view!  What does it feel like for a person experiencing Alzheimer’s?  Everything I have read has been from the caregiver’s point of view.  The information is excellent but this past week I realized that all that information stops short of actually helping us really get a feel for what our loved ones are going through.

A particular book was mentioned a couple of times at my Alzheimer’s support group.  I finally read it last week.  Oh my!  Did it pack a wallop!

I strongly suggest that everyone dealing with this disease – or the possibility of it in your family – read Still Alice by Lisa Genova.  It is a novel written from the Alzheimer’s patient’s point of view.  Yes, it is a novel, but Lisa Genova’s Ph.D. in neuroscience from Harvard allowed her to research the subject from all sides – clinical, caregiver and most importantly, patients. 

She tells the story of Dr. Alice Howland, a world renowned Harvard professor, diagnosed with Early Onset Alzheimer’s Disease.  Alice’s first person account pulls you in completely and lets you have that view into the impact of the disease.  Sometimes sad, as you would expect, the account also provides moments when you can laugh with Alice. 

Most importantly, taking the journey with Alice will build empathy in your heart for anyone dealing with the disease first hand.

The book is available from Amazon http://www.amazon.com/Still-Alice-Lisa-Genova/dp/1439102813/ref=sr_1_1?ie=UTF8&qid=1315872781&sr=8-1

For more information, visit www.StillAlice.com.  You won’t regret it.

You have to think about what they deal with…

I had full intentions of writing about poop today based on a funny incident yesterday.  After my visit with Mom this morning, I decided to save it for another day.

I had an excellent visit with Mom.  We walked and then sat and played a lively game of dominoes with two other residents, the Life Enrichment Assistant and one of the aides.  It was comical!  Mom was snoozing off and on and playing out of turn while June, one of the other residents, bantered back and forth with us all.  So much fun and so much laughing!

I was doing my best to brighten the day for the workers around me.  One of the aides commented that she was “so upset” but that my laughter made her feel better.  It seemed each person had something happening personally and needing some cheering.  The feelings came into better focus when I realized that one of the residents, a sweet little lady everyone called Miss Lu, had passed over the weekend.

I knew that Lu’s time was coming.  I interact with all of the residents and had watched the gradual decline as she stopped eating and talking.  The end came quickly.  She was walking with a walker just a couple weeks ago, then she was in a wheelchair and although she didn’t speak, she would look at me when I spoke to her.  I wasn’t surprised to see hospice involved because she was no longer eating, and then last week, she didn’t see me at all.

Lu’s daughter arrived to bring all the wonderful caregivers some home-baked cookies in thanks for the loving care her mom received.  The truth about the frustration over things happening in their personal lives came out.  They were all dealing with inconvenient things in their personal lives but topped with the loss of their sweet little Miss Lu, it was no longer frustration but terrible grief.  No, Miss Lu was not their mother, or any relation for that matter, but she was loved by them all.

I will not try to tell you that all of the folks that work in nursing homes or assisted living facilities are loving, caring people.  For some it is just a job and it is obvious when watching them work with the residents in their care.

I believe that the majority of people who work long term in those facilities have been given the ability to truly care for the people they are helping – even when the residents are cranky and difficult.  With that caring comes pain because ultimately, their charges are marching toward death.  All the caregivers can do is try to make the residents’ lives as happy and comfortable as possible until the end – when the resident finds true happiness and peace in death while their caregivers deal with yet another loss.