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.”

I (Mom) Need to Get Outta Here!

We made it through winter but it’s not quite warm weather yet and with record rainfall in April, we’ve been stuck inside most of the month.  We managed a few walks and time on the swing on warm days when it hasn’t been raining.  The days can still be chilly but unfortunately Mom thinks it’s warm if the sun is out so I’ve learned to open the back door and let her feel the chill or the wind rather than argue with her.

Mom also wants to “go” even though trips out have become even more difficult.  I take her to the bank because she can stay in the car and I’ve taken her to a store a couple times when I just needed something quick.  It’s amazing the difference time makes, however, because last summer we did all the shopping together.  The trips last summer often included a need for her to use a restroom at least once but we typically made it through that without too many problems and we both enjoyed the outings.

A year later, here’s the typical scenario:  I have her go to the bathroom before we leave the house (10-15 minutes).  I put her in the backseat of the car because one day she decided to grab the steering wheel and “help” me drive.  She doesn’t like sitting back there.  We drive to a store five minutes away and as soon as we walk in the door she says she has to go to the bathroom.  If they have a bathroom in the store, taking her can add 15 minutes to a half hour to our trip because other bathrooms are always more confusing.  I won’t even go into her response to the hand dryers when they don’t have paper towels!    

Although the trips take longer with Mom, time is not the issue.  The real problem is her response to being somewhere other than home.  She wants to “go” but once we get somewhere, whether to a store or someone’s home, she becomes impatient to go home.  The bathroom always becomes an issue – yesterday she used the bathroom at our daughter’s house during a short visit, and then used it four times in just an hour and a half at my in-law’s home.  During both visits she also was giving me both verbal and non-verbal hints that she was ready to “go”.  Her behavior solidified my decision to keep her home unless we’re just going for a ride.

Today it’s raining again and I am the “mean lady who works here”.  She told my husband no one knows how mean I am to her when no one is looking and she hopes “family” will come get her soon.  He had to walk away before he got angry with her but I just laughed.  I know the rain frustrates her and she’s definitely grumpy mom today but we’ll make it through whether she’s happy or not.  At this stage of the game, my husband and I both know that we can’t make her happy so we have to settle for keeping her safe.