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.

Looks like my bathing days are not over…

The saga of Mom’s baths continues.  She’s been in the Alzheimer’s assisted living facility for three and a half months now and although their standard is bathing twice each week, they have been lucky to get Mom bathed once each week.  Actually, there have been weeks when she didn’t have a bath at all.

That may sound terrible but before she moved in with me in May of 2010, she was not bathing properly and I’m sure had longer times without bathing than we have experienced the last three months.  That’s why I have not stepped in other than to bring up the issue.

It wasn’t an easy transition when she moved in with me.  You can look back over my posts and probably find my lamentations about Mom cussing and yelling at me, pretend crying, whining, and even throwing things at me.  Over time, however, she came to realize that I wasn’t a pushover.  I had a very good teacher – her! – who taught me how to handle obstinate little ones.  She may be 95 now and certainly no longer little but dealing with an adult with Alzheimer’s/dementia is in many ways just like dealing with toddlers.

The aides at the facility have tried.  Don’t think that they are just ignoring the need because that is not the case.  Their process is to approach and if the resident vehemently refuses, they back off and reapproach later.  That works for many of the residents because they forget the initial approach.  Not so with Mom!  Either she realizes that she’s getting away with her behavior and keeps thwarting their efforts, or she also forgets the initial approach but has the same reaction each time.  We’re not sure which but sometimes my brother and I think she knows more than it seems… J

Last Friday I arrived for my visit and again, Mom had not had a bath all week.  The aide asked if I wanted her to try then and so we did.  Mom started her normal routine but I looked her square in the face, told her I wasn’t going to argue with her and that she could yell at me, hit me, whatever, but she was going to have a bath because her mother taught her to take one once a week.  She wasn’t happy but she settled in with me giving the bath.

Took Mom for ice cream after her bath!

I notified the Health and Wellness director that given Mom’s continued obstinacy, I would take over giving her a bath but I would do it once a week.  The way they break down their services I have the option to do that and eliminate that portion of the fee.

So, today I went up to visit Mom and gave her a bath.  She threw her little fit – it was almost comical at times – but soon settled in and let me wash her hair and give her a good bath and foot soak.  It was so nice to see her hair so soft and beautifully white again!

I let her know that from now on, I’ll be giving her a bath once a week – just like Grandma taught her and she taught me.  She can’t argue with Grandma!  J

Visiting Your Alzheimer’s Loved One OR How to avoid that haunted visitor look…

Have you ever visited at a nursing home or assisted living facility and felt uncomfortable?  I see it in visitors’ faces quite often – even those close family members that visit their loved ones frequently.  It’s almost a combination of worried and harried.  They have smiles for their loved ones but their eyes show their smile is on the surface for the benefit of their loved one.

So many things cause that look.  Guilt because the loved one has been placed in a facility instead of keeping them home, uncertainty about how to communicate with the loved one who is losing the ability to put thoughts and sentences together, fear of the other residents of the facility because it appears they are not mentally capable of communication, and the list goes on.

When I see that look, I count my blessings because although I’ve never been comfortable in social situations, various things in my life have given me the ability to be comfortable in a nursing home. 

Being the youngest in the family, I spent more time than my siblings did with Mom and Daddy.  Daddy was always one to visit folks in the nursing home and I was right there with him.  Alzheimer’s appeared to be less of an issue back in those days because folks generally got sick before their minds went – it seems we live a lot longer now.

I felt so comfortable with the elderly that I took a job in a nursing home when my girls were little.  I helped in the kitchen and dining room and loved every minute with the residents because they all had their funny quirks that made them who they were.  For example, there was Gladys.  She would put her head on the dinner table and pretend to be asleep but if you got down and looked up at her face, her eyes were darting around to see if anyone was noticing.  J  She just wanted someone to put her in bed.

What can you do to be more comfortable?  Biggest thing – learn the names of both the staff and the residents and always greet them with words and a smile.  It’s even important to greet those residents that don’t look like they can communicate!  Don’t hesitate to ask them how their day is!  When dealing with Alzheimer’s, you never know what kind of an answer you might receive but that’s the fun.  It’s important to get to know the folks that live with and help your loved one so you can understand the dynamics of the atmosphere at the facility.

If at all possible, take part in the activities that are provided for the residents.  You may feel like taking your loved one to their room or away from the others and that’s fine for a bit but if your loved one sees you spending time doing the activities with the group, it makes them feel that you value the others in their life there at the home.

So what did I do today?  I greeted each and every resident when I arrived.  I found Mom alone in her room but brought her out to exercise with the group and we helped them make Rice Krispie Treats.  Mom was tired this morning but because I took part, she did also. 

I spent a few minutes alone with Mom before I had to leave but she was happy to go back to join the group.  They were listening to songs from the Sound of Music and I sang Edelweiss to Mom before I left.  She was all smiles as I kissed her goodbye and said goodbye to everyone.  We blew more kisses as I walked out the door – a happy visit for both of us!

Alzheimer’s, Sex and Nursing Homes

Being the baby of the family, I think I had a different experience growing up than my siblings did.  The oldest three were already busy with school by the time I was born and when the fourth headed off to school; I still had three years alone with Mom before heading there myself.  Life continued that way with the older ones heading up and out and Mom and I were quite often alone together after I came home from school.  When I was a teenager, we used to watch Phil Donahue together and that generated many discussions on many different topics.  The best thing was that I was allowed to have my own opinion and Mom would discuss it with me, not try to make me see it her way.

Those open discussions may be why, when Daddy was taking his journey through Alzheimer’s, Mom just opened up to me one day and said that Daddy wanted to have intercourse every day and she was tired of it and didn’t know what to do.   At the time, I’m thinking “TMI” (too much information) but I didn’t say anything, just let her talk.  I certainly didn’t have an opinion on that subject because although I was married and already had two children, I was still in my early 20s and intercourse every day was just fine with me!

Talking seemed to help and I didn’t hear any more about it and it wasn’t long before Daddy went into the nursing home and could no longer remember how to walk, let alone think about having intercourse.

So here I am all these years later and Mom is now in an Alzheimer’s Assisted Living facility.  In her little world there are 11 residents, including Mom, all in varying conditions of the later stages of Alzheimer’s.  Six are women, one of whom uses a walker and one is chair/bed bound.   That leaves five men; one using a walker and two are chair/bed bound.

So what does that have to do with sex?  Well, there may not be anything near intercourse happening but it’s always good to remember that these folks have Alzheimer’s – they’re not dead!  It’s also good to remember that just because they have spouses, it doesn’t mean that they always remember that!

I have to say that the staff members at the facility are well aware and watch over their charges carefully.  One of the residents is a gentleman that may well be in that stage that Mom described to me years ago.  He has a wife but she is healthy and still lives at home so there are times when we’ll see him strolling with one of the other ladies holding hands.  It doesn’t last long though because the staff members are quick to remind both parties that they have spouses who wouldn’t appreciate it.  Some might wonder why make a big deal out of it but after Mom’s stories… hmmmm…

What about Mom?  Well, she just keeps telling everyone she’s getting married soon.  We haven’t met the guy but we’re hoping it’s Daddy – at least that’s who she was talking about today.  J

Losing Ground on Bathing and Changing Clothes OR Moving Mom into a nursing home doesn’t mean my caregiving days are over…

It’s amazing how quickly good habits gained can be lost in the move to a home – or even a different room in a home.

Mom and I had settled into an excellent working schedule when she lived here with me.  Monday was laundry day, Thursday she had a bath and clean clothes and I washed towels, Friday I changed the sheets on the beds and washed them and on Sunday she put on clean clothes again.  On a daily basis, I cared for her feet and took care of changing her Depends with no issue.  She dressed herself and made her bed each morning and changed to her nightgown on her own each night.

Unfortunately, we lost a lot of ground in the move to the assisted living facility.  Initially she was in the area that was assisted living but for those in far better mental shape than Mom.  She can fool people though and even with our normal schedule written out hour by hour, I think they thought she could handle more herself than she actually could.  I commented multiple times on her dirty hair – Mom has such beautiful white hair when it is washed once a week – but was assured that she was bathing.  Turns out that wasn’t the case, she was just fooling them.

When they finally stepped in, suddenly Mom had someone else trying to bathe her and she was back in the “I’ve been doing this all my life!  I can do it myself!” mode.  Arrrggghhhh!  She yelled at the aides and they backed off.  The person in charge of the aides, Gloria, finally began doing the bath herself and Mom was clean again.

Recently, Mom moved into the area of the home for those in the later stages.  At the same time, Gloria was on vacation.  For two weeks, Mom’s hair was dirty.  I asked and they would check the schedule and say that Mom would be bathed on this day or that.  In the last discussion, I finally learned about the fits Mom was throwing when they tried to do it.  Gloria was back from vacation that day and happened in on the conversation.  I offered to give Mom a bath but she assured me she would see to it that day.  As promised, Mom was bathed head to toe and I let Gloria know she was awesome!

Mom in her new room

Just as when Mom first moved into the home, Mom is not happy right now.  Yes, she was thrilled to have her room moved back there but with the move came other changes to her routine.  For example, the aides check on her during the night – not to wake her but just to see that she is okay.  Also, I had to remove her clothes from her room because she was changing them several times a day and mixing clean and dirty clothes together.  To think that just a year ago I was fighting with her to put on clean clothes!! 
Thankfully, I know that in spite of her grumpiness now, in a couple more weeks she will adjust to the change and won’t remember anything different.  At that point she will be happy again.

Meanwhile, I’ve learned that while Mom may not be living with me any longer, my caregiving days are not over.  I visit two to three times a week and work closely with the management and staff of the home to ensure everything is working well between Mom and her caregivers.  Thankfully, I have a wonderful husband who feels that watching over Mom is important!

Noodle Ball, Toilet Paper Holders and Cookies!

You just never know what you’ll find when you walk in to see Mom!

Last week Mom was able to move to a room in Clare Bridge, the area of the home that is for the more advanced stages of Alzheimer’s/dementia.  Good for Mom but sad because that meant that another resident had finished her journey and passed on.

I wasn’t there when they moved her but evidently she saw her things passing by and immediately jumped in to help.  She’s so happy to have her room there where she can go to it whenever she wants!

I visited the morning of the move and must have arrived shortly after she had settled in.  I had my granddaughter and our little Hurricane with me and when we walked through the door, the residents, including Mom, were playing noodle ball.  What’s noodle ball?  Well, you blow up a balloon and use those foam noodles that you take to the pool to bat the balloon around.  It’s great for stimulating eye/hand coordination and working the minds of the folks there.  You can imagine Hurricane’s reaction…  It was his first visit and it took a few minutes for him to warm up but he was soon playing noodle ball right along with them!

After the noodle ball was over, Mom took us the few steps down the hall to her room.  She was so proud of it!  Just pleased as punch!

Yesterday I visited again and, as is my habit, I went through her drawers to see if there was anything of concern.  I found a half full snack bag she had hidden away and gave it to her to munch on while I continued to look through the drawers.  At first glance, things looked okay but as I looked deeper, I found her purse was full of pretzels and a great big cookie!  The RNA and I had a good laugh about that as she took the purse out to empty it.

I also noticed that Mom had tucked various pieces of clothing in the drawers.  My nose doesn’t work too well but I suddenly got a whiff of something and as I worked my way through the clothing, I found an obviously soiled shirt – good thing my husband wasn’t there because the smell wasn’t pleasant.

Once my foray into Mom’s dresser was finished, we headed out to the hall to do some walking.  Mom wanted to go outside but I had to tell her no because of the extreme heat we’re experiencing.  So, we just kept walking around the hall.

As we were walking, one of the gentlemen came out of his room carrying a toilet paper holder – the little springy thing that you put the roll of toilet paper on.  He was telling me something about it with a big smile on his face.  It’s so much fun to interact with the residents!  I alerted one of the staff and she checked in his room to see if he had taken it from there.  No, so into the next room to check.  Sure enough, he stole it from someone else’s room.  It must have been the day for it because I also learned that one of the other gentlemen had just pulled his entire toilet paper holder off the wall leaving a big hole in the drywall!

What fun!  Never a dull moment, that’s for sure!

Adjustment for Mom, Adjustment for Me

The thought of moving a loved one into a nursing home brings out a lot of scary feelings.  There are good homes out there but all of them get a bad rap when any story of neglect comes along.  The important thing to keep in mind is that, even when you find a good one, there will still be bumps along the way as the staff of the facility and your loved one adjust to each other.

Another thing to remember is that new and beautiful doesn’t mean good care and old doesn’t mean bad care.  Clean with a loving staff beats an overworked staff whether the facility is new or old.  Daddy was in a very old nursing home but it was clean and the people were kind.

We found a good place for Mom and each day she seems more adjusted to her new home.  She still has her room in the larger area of the home and day programs in the smaller area for those in the later stages of Alzheimer’s.  There was the possibility of moving her into the smaller area but a gentleman in much more need of that room moved in recently.  Mom is handling the current situation just fine and, as a testament to the staff, the gentleman that moved in has gone from seeming like an empty shell on the day he moved in to a smiling, happy guy ready to play games or sway to music.

Over the last month we, the staff and I, have been fine-tuning Mom’s care.  The first couple of weeks Mom’s hair seemed to always be dirty – until I mentioned that her shampoo was in her closet.  She probably would have told them to use the soap and that nice, moisturizing soap I bought for her would have made her hair look dirty.  Early on I also found that they were not putting a corn pad between her toes as I had listed on her care information.  Consequently, her feet began to hurt when she walked.  Again, I called it to the attention of the care coordinator and with just a few stumbles along the way, the staff has her toes looking fine again.

The air conditioner has also been a fun adjustment for all.  Mom hates moving air, especially when it is cold, but after many adjustments, we seem to have found the answer.  We increased the temperature to match that of the area where she day programs and the maintenance man has offset the cover of the unit so that the air no longer blows directly out.

With Mom settling in, it’s time for me to decide my next step.  I want to keep flexibility in my schedule so that I can continue to watch over Mom and her care.  Given the economic times, I have a couple of possibilities floating through my mind.  I started making jewelry while Mom was still living with me and I will soon set up a website to sell them.  The next step will be to jump back into temporary work.  I like the flexibility of it and the diversity of the assignments.  Hmmmm, and maybe some alteration work (bridesmaid dresses, hems, etc.)…

Pet Therapy and Bus Rides!

I just returned from a LONG visit with Mom.  J  Before I get to that though, I should tell you about my visit last Thursday.

After a conversation with the Life Enrichment Coordinator some time ago, I knew that my daughter’s dog, a wonderful black Lab, could visit Mom.  It just so happened that my grandsons had left on a trip and Bonnie was feeling lonely so my daughter and I took Bonnie with us to visit Mom.

When we arrived, the Life Enrichment Coordinator met us at the door – and proceeded to take us around to all the dog lover residents in the main area of the facility.  They were thrilled to see Bonnie because their pet therapy dog had not been around for quite some time.  When we finally got through the main area, we made our way back to the smaller area of the facility where Mom spends her days.

When Bonnie walked in, everyone stopped what they were doing and my daughter took her around to each of the residents – and Mom, of course. 

Bonnie was well petted and even took a liking to one of the gentlemen and lay on his feet.  J  I think they’ll be very happy to see her come back again any time!

Today I went to visit by myself.  I had planned to visit today but received a call this morning asking if they could take an x-ray of Mom’s chest to make sure she didn’t have pneumonia so I was happy I was heading up there.  When I arrived, I expected to find her sounding terrible but she smiled and sounded just fine.  I could tell she was a little more tired than she normally is when I visit but her appearance didn’t indicate discomfort.  I heard her cough a couple times while I was there and figured that must have been what caused their concern.

We took a little walk around as I usually do with her and then we sat down and did the puzzle while some music was playing and one of the residents was dancing with an aide.  Mom enjoyed the puzzle and gave me that smile that I was used to seeing when we finished one.  After another little walk, we sat down and watched a show about animals on TV and she really seemed to enjoy just sitting there with me, dozing off here and there while we sat.  She showed me a nail that was a problem and I proceeded to do a little impromptu manicure.  Again, she was very pleased.

While we were sitting there, the Life Enrichment Assistant asked if I would like to take a bus ride with them.  She was taking ten of the residents for a little ride and thought I might like to join Mom.  I said sure and just a little later we all piled into the bus and took a nice long ride on some pretty back roads.  Mom dozed through some of the ride but definitely enjoyed getting out.

The length of my visit went from two hours to almost four but Mom enjoyed it and I enjoyed being with Mom.  A good day!

Mom and her babies...

I know I said I would stay away but given that I’m the one overseeing Mom’s care, that’s a little hard to do.  So I went today because she has a bath on Monday and Thursday and I wanted to see if her hair was clean.  It’s been greasy looking the last few times so I was concerned.

When I arrived, I first checked her room to ensure everything was in order.  Temperature was comfortable and some things were laid on the top of her dresser – unusual because she has been “packing” everything in her drawers.  Otherwise the room was neat and clean.  I then searched out Mom.

Mom has been going to the day program in the smaller section of the home that is specifically for residents in the later stages of Alzheimer’s.  Mom’s room is in the main area of the home and the residents there are high functioning in the earlier stages.  My thought initially was that Mom belonged in the smaller section but I was happy to let the professionals spend time with her so that they could make an educated decision about her needs.  They quickly found that she was lost in the mainstream and the habits of the later stages were even more pronounced due to the stress caused by that feeling.  Consequently, they decided to see if she would adjust more readily to the smaller section.

I found Mom happily rocking her babies.  She was very happy to see me but didn’t make a move to get up.  She was quite busy. 

We talked and her only distress was that she couldn’t get “home” when she wanted to – but she wasn’t referring to my home.  I realized “home” has become her room in the main area of the facility!  Woo hoo!  Although she is currently not happy that she can’t get to her room during the day, she has made the leap mentally to it being her home!

After having me hold the babies for a bit while she “helped” get the dining room ready for lunch, she told me to put them to bed and she would check in on them after lunch.  We took a walk outside and then a couple walks around the little rectangle that is the facility.  We talked about how they (the staff) need her help with things and she seemed happy with that.  It was also obvious that if her room was in that section, she would be happy.

I settled her in for lunch and gave her a hug and kiss goodbye.  No upset, no whining – she just gave me a kiss and a smile when I told her I would be back again.

I stopped on the way out and had a conversation with one of the managers.  They will have a care meeting in the next week and, dependent upon what resident’s needs are most critical, Mom may just be getting her wish.  She might have her room right there in the smaller area!

Maybe I’m the problem…

Shortly after Mom was born, her mother died.  My grandpa suddenly had four children to support and care for, one of them an infant, with no mother to help.

When Mom was 11 months old, a wonderful but childless couple wanted to adopt Mom.  My grandpa allowed them to adopt Mom and for the first few years, he and Mom’s siblings would visit on a regular basis.  During Mom’s toddler years, her new mother found that after the visits, it took several days to get Mom back to normal behavior so she explained that to my grandpa and asked if he would mind staying away.  Grandpa understood and stayed away but stayed in touch with Mom’s new parents.  During Mom’s teen years she met my grandpa and her siblings and consequently I grew up with three wonderful grandpas (one paternal, two maternal) and one wonderful grandma on Daddy’s side because my new grandma, whom I share a middle name with, passed before I was born.

I’m beginning to think that Mom’s behavior might be much the same as then.  When I’m not around, she is all smiles for the caregivers in her new home.  There has been some expected resistance to help bathing but nothing drastic and she soon goes along amicably.  She never mentions me or my husband to the caregivers.

When family members have visited, she evidently has visited without distress or asking them to take her home.

Then I walk in.  Mom immediately lets me know she’s ready to go home.  As soon as I say that she is in her new home, the behavior starts.  She goes to her chair and whines and cries (fake).  She keeps that up until I look at her and say, “Mom, that doesn’t work for me so you might as well stop.”  Just like that she turns off the fake crying and gets angry with me.  Then it’s the “Lalalalalala…” indicating that she doesn’t want to hear what I am saying.

That was the scenario on my second visit.  When my husband arrived, she immediately said, “Well, you’re going to take me home, right?”  Then he joined me in the hot water.  J  Shortly after he arrived, the Life Enrichment Coordinator arrived and teased Mom out of her pout by mimicking the look on her face.  Mom was all smiles for her.

I discussed the whole situation at the Alzheimer’s Support Group.  Given Mom’s stormy behavior as a little girl and with my husband and me now, and her good behavior with her caregivers and the family members who visit, the unanimous response was that I should stay away long enough for her to forget. 

It makes sense.  When we moved her to our home, my brother stayed away.  Although she had lived with him for 24 years, the next time she saw him, she didn’t have an expectation of going home with him.

So, for now, I will keep in close touch with her new caregivers and hope that my many family members will visit her.  I know visits aren’t easy because she is in the later stages of Alzheimer’s and communication isn’t easy.  At this point in time though she does still recognize some faces and seeing her face light up can hopefully make it worth the effort.

Mom is not happy but life will be good…

We knew adjusting to Alzheimer’s assisted living wouldn’t go without a hitch but the calm of the first days and Mom’s comments that she liked the place told us that eventually all would be well.

I stayed away for the week as planned but reports from family members who visited and staff members at the facility were good.  I was a little concerned when my sister-in-law mentioned that Mom knew she had been there four days.  Hmmmm, was she counting the days until I came to take her home?

There were a couple of issues that popped up during that first week.  The thermostat cover in Mom’s room disappeared and the room was hot.  Then I received the call asking if Mom wore a bra.  I told them no but wasn’t surprised to hear the question.  The hot room had given Mom the notion to change her top – to one that wasn’t appropriate without something underneath.  I learned early on that it was better to keep Mom in two layers of tops and ensure one of them was long so that she didn’t accidentally flash someone.  J

Yesterday I finally visited myself and took my daughter along with me for moral support.  As I expected, Mom was “packed” to go home.  How interesting that was!  As I unpacked, I found clean clothes were mixed in with dirty clothes and even soiled Depends.  All of that on top of clean doll clothes that Mom had folded and packed in a basket that belonged to the facility.  Heading to her dresser drawers, I found snacks tucked away, a cloth napkin from the dining room in her purse (nothing else) and the missing thermostat cover.

While I was doing that, my wonderful daughter was spending the time talking to Mom, explaining why she would be staying in her new home.

Next I addressed the other issues that I found.  We moved Mom in while the Health and Wellness Director was on vacation; therefore Mom had not been assessed.  I thought she was probably going to need more care than they were initially thinking and by the end of my week away, some of those things were obvious to me although they may have easily been overlooked.  I worked with the just returned director, the Care Coordinator and the RN to get the care plan straightened out and they were wonderful, responding immediately.

First, Mom’s ankles were swollen, her hair was dirty and her head sounded very stuffy.  I think her tinkering with the thermostat caused those issues and the maintenance man immediately put a lock box over it and adjusted the temperature to match that of the rest of the facility.  We walked Mom around the square a few times and by the time we left the ankles were looking better.  Meanwhile the nurse contacted the doctor about an antihistamine to clear up Mom’s head.

Second, Mom’s corn pad was missing from her foot so her toes were tender and that, along with the dirty hair, made me ask about her bathing routine and schedule.  It seems there was miscommunication about the level of care needed but when I spoke to the H&W Director, she and the Care Coordinator immediately met about it and set it all to rights.

Life is good and eventually Mom will be happy!

Mom is happy and life is good!

I know it’s only been a little over 24 hours but what a 24 hours!

Yesterday my sister came to take Mom to lunch and then up to her house for a haircut.  We didn’t tell Mom what we were doing because it would have caused too much anxiety.  While they were on their trip, my husband, my son-in-law and I packed up Mom’s things and moved them into her new home.   We had to make a quick trip for a few things we forgot, of course, but the move in went smoothly.

After we were finished, my sister brought Mom around.  We walked her around to her room and when she walked in, she smiled and actually looked pleased.  There was an edge of uncertainty but we told Mom that my husband and I were going away for a week and that the doctor thought it best that she stay here.  She seemed to accept that and we then took a walk around the square and the staff all greeted her along the way.  Christina, the Marketing Manager, walked up, gave her a hug and said how happy she was to see her like they had known each other a long time.  Mom told her how happy she was to see her too.  J

It was getting close to dinner time there and we didn’t want to interfere so we said our goodbyes as Christina asked Mom if she would mind helping fold linens.  Mom said yes, hugged and kissed us goodbye and didn’t look back as we walked out the door.  Step 1 accomplished!

This morning I called the nurse to see how the night went.  The night went fine and Mom came out for breakfast.  While I was on the phone Mom was actually close by looking out the window.  Step 2 accomplished!

This afternoon my sister stopped by for a quick visit.  Mom was playing a game with the other residents but saw my sister approaching the door and announced to everyone that her “mom” was coming to the door.  A little bit later she laughed and told everyone it was her daughter.  Mom finished her game and then took my sister and my great grandniece to her room.  She led them down the hallway and after turning the corner, she looked at each door until she found the one with her name on it.  Step 3 accomplished!

I am so thrilled!  I knew it was time and I felt we had made the right choice.  Mom has been terribly bored at our house but I couldn’t get her interested in doing anything other than jigsaw puzzles.  I know she was also frustrated by the locked doors that limited her wandering.  They were for her safety, and our sanity, but none of that meant anything to her.  They were just another limit to her freedom.  Now she can roam when she wants because there are people working 24 hours a day.  She can walk around as much and whenever she wants.  She can also visit with others – some even close to her age!

She is still in a secure environment but for Mom, she is free at last!

I lost my jolly…

I knew it was time to make a change.  I lost my jolly. 

I’ve been known for years for my laugh.  The people at work always knew when I was around because of it.  It’s not that I’m a loud talker like my husband.  His voice booms even though he is talking in a normal voice.  My children take after him.  I, on the other hand, was never a big talker but I’ve always been one to laugh.  It’s sooo good for the soul!

Over the last couple months I realize I haven’t been laughing.  Oh, here and there maybe, but not like I used to.  I think it finally took its toll when I was no longer getting enough rest.  Mom’s sleeping/waking has been an issue for quite some time.  Remedies would work well for a time – changing her bedside lamp to a nightlight bulb, putting a timer on her main lamp, giving her bright light during the day, limiting the amount of time she naps during the day, etc. – but they didn’t last so we were always looking for the next remedy.

So, no laugh plus no rest adds up to exhaustion and finally sick.  But a sick caregiver has no impact on the dementia brain.  Mom has been waking up at all different times and getting dressed.  4:30 and 5:00 am made 6:00 am look good.  Then we were hit with 3:30 am!

My husband and I have never been known to stay up late.  We are typically in bed between 10:00 and 10:30 pm.  I have, over the years, suffered from insomnia and that is very tiring but I now believe that it was far easier to deal with than Mom.  Insomnia is my body deciding what it wants to do and I have tricks that I learned to use to deal with it.  On the other hand, the interruptions caused by Mom are totally separate from what my body is doing.  I can be happily, soundly sleeping and suddenly jolted awake by an outside disruption.  I find that far more tiring than bouts of insomnia – even when the insomnia has limited my sleep to a couple hours.

Today I am looking forward to tomorrow when we will get Mom settled in her new place.  She will be able to get up and wander without disturbing anyone and yet be safe.

Tomorrow I will look forward to learning how to sleep again.  To stop my mind from listening, even in sleep, for a sound indicating that something is wrong.  It may take days or even weeks but eventually I will be sleeping soundly.

And I will find my jolly again… J

I'm Ready to be a Daughter Again...

A lot has happened in the last week.  Although the infection I developed seems under control now, I can’t say the same for my asthma at this point but I am making progress. 

In spite of the exhaustion and the lack of a voice a good portion of the time, I managed to research area facilities looking for a good placement for Mom.  I reviewed various types of facilities and their quality, health and nursing statistics and then, having narrowed down the list to the ones I wanted to contact, I called them.  I explained my situation, discussed Mom’s needs in comparison to their programs and costs, and made appointments at three facilities.

The difficulty of the situation is Mom’s health.  She is, at 95, completely healthy and still takes no medications.  While she gets out of a chair very slowly and gingerly, once she has her feet under her, she can take off quite quickly wherever she wants to go as long as the ground she is walking on is even and sturdy.  My brother used to tell of her literally flying from one end of his long ranch house to the other when he would get home.  Her room was on one end of the house and the garage on the other but she could beat him to the door!

While Mom is physically healthy, her brain is totally unreliable.  I don’t know from one moment to the next where her brain might be.

All of this had to be taken into consideration when choosing a place for her to live.  She doesn’t need a “nursing home” because she is not sick in the least and only needs assistance, not nursing care.  She needs a place that will allow her to be as active as possible and as involved as possible without her feeling restricted or “sterilized”.

Yesterday we – my husband, my sister, my niece and I – went to the first appointment.  It was a small place specifically catering to Alzheimer’s/dementia.  It wasn’t a hospital/nursing home setting.  It was like a home!  Each resident has a little studio apartment opening into the hallway that is one big square.  You can’t get lost because no matter which way you go, you get there!  We found almost all of the residents were together in the living room area playing a game and just generally being together.  The living room was right at the front door so they could watch everything that was happening – which, of course, is what they like to do best.  There was a wonderful secured courtyard that was open for them to go outside whenever they wanted.  We were sold!

In fairness, we kept the other two appointments.  Just walking in the door of each facility answered our question, however.  The hospital-like settings with blaring PA systems and corridors to get lost in were not what we wanted for Mom.

We’ve made all the arrangements and we will move her in on Monday.  We won’t tell her until she gets there because we don’t want to cause anxiety but after she adjusts, we know that she’ll be in a happy place!

And me?  I can be a daughter again…J

One Year Later and Something Has to Give

This Mother’s Day weekend held important anniversaries.  Saturday, May 7, was one year since we moved Mom in to our home so that I could be her 24x7 caregiver.  Sunday, May 8, it was exactly 23 years since we walked into our home for the first time as homeowners.  It was also Mother’s Day that day 23 years ago.

This home has seen a lot over those 23 years.  We raised four children and sent them off into the world.  We are so proud of all of them and feel that the years they spent with us and together made them who they are today.

This past year brought an entirely new experience to our home.  It has had its ups and downs as we have watched Mom slip and slide between the later stages of Alzheimer’s.  The physical health that she possesses that amazes her doctors and all who meet her is in sharp contrast to the state of her mind.

As you may have read in earlier posts, I greatly enjoyed spending time with Mom last summer as we would take walks or swing in the sun and she would marvel at the beautiful sky.  The loss of her mind has at times been a great source of humorous stories – stories that I know she would not mind us laughing about much as we laughed at the various stories about Daddy all those years ago.

You may have also noticed that as the winter dragged on and the gray days and the rain just didn’t seem to want to leave us, I was struggling more and more with the continual, although slow, decline in Mom’s mental state.  The decision to stop taking her places and the continual decline has effectively made me a prisoner in my own home.

In addition, Mom’s sleeping habits continue to evolve and it is not unusual for her to get up as early as 4 am and get dressed for the day.  At times she has pounded on our door and yelled, or she just keeps pacing between her room and the bathroom making so much noise that we can’t sleep.  We’ve tried talking to her about it but the understanding isn’t there.  We’ve kept her awake all day and still there is no consistency to her waking.  She is not agitated when she gets up, just noisy, so for those of you that might say medication, again we say no.  As the doctor says, we don’t know what side effects we might face that could potentially be far more troubling than her waking early.

The stress on us caused by this new behavior came to a head on Saturday.  It happened to be the one year anniversary of moving her in but the issue at hand was my health and that of my husband.  I am sick and without sleep, I’m struggling to fight something that in the past would not have taken me down.  Lying in bed as she walked around early Saturday morning, I finally looked at my husband and said, “I’m done.”