Wednesday, February 23, 2011

"They are coming to get me."

What a week we’ve had!  We returned from the trip to Florida last week and, as I mentioned a few posts ago, I found the caregiver’s rings that Mom tucked away.  Every day since then has brought something new!
Our trip was a first.  My sister has spent weekends with Mom to let us get away but this time, we had a Visiting Angel helping too.  During our trip, the VA stayed with Mom all day on the weekdays and made sure she had her breakfast, lunch and snacks.  The VA also took care of changing socks and Depends and did the normal bathing on Thursday.  My sister took care of dinner and stayed the nights and also took care of the weekend.
It sounds simple enough but oh my goodness, we rocked Mom’s world!
Prior to the trip, Mom would get up in the morning and dress before coming out to breakfast.  On our return, she started coming to breakfast in her nightgown.  Breakfast and changing of socks and Depends weren’t horrible but I had a few days of Nasty Mom and Throwing Mom about various things.  One day I tried to help her with her blind and you would have thought I committed a crime!  Oh my goodness!
Another day I mentioned that we were going to go to the grocery store and the next thing I know I hear her rummaging around in her room.  She had laid out on her bed nightgowns, hats, purse, hairbrush, sweater, etc.  When we returned from the store, she said, “We probably missed them.”  When I asked who, she said “they” were coming to pick her up.  Wanting to get that over with, I told her “they” cancelled.  “Well, they didn’t tell me!” she said.  I replied, “They cancelled yesterday.”  “Well, why didn’t they tell me?” she said.  Me, “I don’t know.”
That seemed to lay it to rest for the moment but for a few days she would spend some time gathering things in her room for when “they” came to get her.  When I told her she lived here, she would go back in her room and put it all away again.
We experienced the “stealing” I told you about in a previous post a few more times.  One day I noticed that the basket that holds our Wii games was missing.  Sure enough, I found it in the bottom of her closet.  Just yesterday a battle ensued when I found her stuffing VHS tapes and a DVD into a Puffs box that she likes use to keep her “things” by her chair.  I stopped her before she managed to break the DVD and had to tear open the box to get the items out.  Yelling, throwing and stomping back to her room was the result when I told her I had to get rid of it because I had to tear it open.
Eight days later we are getting back to normal – or whatever normal is when dealing with dementia!  J

Tuesday, February 22, 2011

Elderly – Stay at Home or Nursing Home?

Taking care of Mom has given me reason to contemplate the future.  As I said in my last post, while I’m glad to have taken on Mom’s care, I have no desire to have my children do the same for me.  I don’t think Daddy had this situation in mind for the future either.
Grandma and Grandpa - that smile is what I always remember when I think of Grandpa!
When I was little, I had a wonderful grandma and grandpa that lived close by in a house that Daddy and Grandpa built on a small bit of land that had a pond.  I have wonderful memories of going to their house with the little jar of redhots sitting on the big old radio right inside the front door and the brass candy dish on their buffet that always had some kind of chocolate candy in it.  Chocolate stars were my favorite but sometimes they had nonpareils (snowcaps to some) that Grandpa liked.  If we happened to be there in the evening, we shared their nightly ice cream with them!  I can also remember helping Grandpa feed corn to the ducks that visited the pond and the walk around the pond with the little bridge that crossed the creek.  I loved it there and I loved my grandma and grandpa.
Me, my four sibs and cousins in front of Grandma and Grandpa's house.  I'm in my big brother's arms.
At some point as I was growing up, Grandma and Grandpa made the decision to move to Otterbein Retirement Home.  It was a wonderful place that gave Grandma and Grandpa a nice apartment to live in and the ability to socialize with their friends that were there, yet it also gave Grandpa, a talented handyman/tinkerer, a place to fix things in the workshop while he was still able.  As the years passed, their health and Grandpa’s memory declined.  They eventually moved through assisted living and finally into the 24x7 hospital type of care – the nursing home area.  My daddy took my children up to see them every week until Grandpa and Grandma died.
Daddy had plans to do the same before Alzheimer’s set in at such an early age.  He was only 61 when he retired from teaching and by the time he was 71, it had taken his life.  For years their name was on the list for Otterbein until Mom finally took her name off the list.  As I think about that, Mom had many friends at Otterbein and would have had the opportunity to be with them.  Instead, she chose to stay in my brother’s home.  She never drove a car so over the years she became more and more isolated as she eventually refused to leave the house for various reasons.
Being the youngest of five, I’ve spent a lot of time sitting back and watching what others have done before me and learning from it.  Now having taken on Mom’s care, I have learned another lesson.  I plan to do as my Grandma and Grandpa did and as Daddy had planned to do.  I want my children to be my children always and let someone else do the caregiving.

Sunday, February 20, 2011

How Long Will This Last?

Someone asked me recently if I ever get tired of being a caregiver.  I gave a perfectly honest answer.  Yes, there are times when I wonder how long this will last; when I will be able to get back to a normal life.  I love my mother and I’m doing this because I can but through this experience I have learned that I don’t ever want my children to have to do this.
Being a caregiver for someone with Alzheimer’s or dementia progressively limits your freedom as time passes.  Mom lived with my brother for 24 years and he was able to go to work each day but over time, her presence in his home created more and more complications.  First there was the move out of her downstairs apartment into two rooms on the main floor because she could no longer do stairs by herself.  Locks were put on doors and signs were put up reminding her not to go outside after she fell down and broke her arm. 
We began to feel that she needed someone around during the day but it still appeared that she was handling her day to day functions on her own.  It wasn’t until I was with her all day that it became apparent her functioning was not what we thought it was.  That is often the case with the elderly who live alone.  You may not realize the truth of the situation until you are actually with them as they go through their daily activities.
Her mental decline has continued since I began caring for her.  We used to take little drives every day to pick up milk, bread, or some other small item.  Now the trips are fewer, not just because it has been winter but also because it is more confusing for her and getting ready for the trip can be a trial.  We spend more and more time within our four walls.  That has an impact on both of us.  I can see the boredom overtake her at times as she sits and looks out the window.
For me, I especially miss the spontaneity of my life before I began this chapter of it.  My husband and I were empty nesters and would hop in the car at a moment’s notice to go do this or that.  We often joked about my husband not being able to stay at home for a 24 hour stretch – he just had to go somewhere!  In addition, we went camping two weekends a month between March and October, sometimes more, and took week long vacations in February and November.
We do still have plans to get away one weekend each month and we are very thankful for my wonderful sister who stays with Mom while we are away.  The spontaneity of our life is lost for now – as I sit here contemplating the need to go to the grocery store and everything involved in managing that trip.
Am I sorry I embarked on this journey?  No.

Wednesday, February 16, 2011

They Belong to the Family

In January we started using the services of Visiting Angels.  Every other Saturday a woman named Mary comes in and stays with Mom for four hours while Steve and I get some time to ourselves or to be with friends.  Though short, those four hours away are wonderful!
The first visits went so well that we decided to take a long weekend and fly to Florida to visit Steve’s brother and our sister-in-law.  As usual, my sister took care of the weekend and nights but this time she was able to go to work because Mary stayed with Mom during the day.
We left on a Wednesday afternoon so Thursday morning, Mary had to handle Mom’s bath for the first time.  She knew my process so started by washing Mom’s hair.  When she did it, she took off her rings and set them aside.  She proceeded with the bath and all went well.  At some point during the day, Mary realized that her rings were missing.  When she asked Mom about them, Mom’s response was, “They belong to the family so I put them away.”
Mary let my sister know what happened and Pat spent time searching high and low for the rings but could not find them.  Their fear was that they had gone down the disposal which Mary had already run that day before missing the rings.  Mary assured Pat not to worry about it.
Knowing Mom’s hoarding tendencies, we knew the rings had to be somewhere.  She doesn’t throw anything away.  Pat continued to look and we gave her some ideas but they just didn’t surface.
We returned from our trip on Monday afternoon and although I didn’t spend time worrying about them on vacation, they were fresh on my mind when we arrived home.  I looked a little on Monday but when Mom fell sound asleep in her chair on Tuesday morning, I did some heavy searching in her room.  I noticed her wallet was lying in one of her drawers rather than being in a purse.  It was also semi-covered by two pictures.  Hmmm, seemed fishy.  Sure enough, I picked it up and it jingled – but Mom has no money.  So what was jingling?  The rings, of course!  They were in the coin purse section, along with a sweater clip bearing Mom’s initials.
So, here’s another little lesson about Alzheimer’s/dementia.  People with dementia steal!  They don’t steal in a Commandment sort of way – it’s more like a toddler just learning about the word “mine”.  Suddenly, everything is “mine”.  It’s the same for those with dementia.
Today I caught Mom sneaking toward her room with two pretzels.  I asked her about them and she told me she was going to eat one and…  I explained that we don’t take food to our rooms, we only take what we want to eat at the moment and that’s why they are in containers.  I was watching because when I went through her drawers, I found chips and crackers that weren’t there when we left on vacation.  J

Monday, February 7, 2011

It Takes a Village

Years ago, Hillary Clinton wrote a book entitled It Takes a Village about how others beyond parents impact a child’s wellbeing.  I think the same could be said for the elderly!
This thought hit me today because a friend sent a funny e-mail about a husband who answered a phone and proceeded to tell a wife that she could have all the things she was telling him she wanted to buy.  It was only after the conversation that you find that the phone did not belong to that particular husband.  I, of course, got a nice laugh from the joke and then thought about my husband.  Although the outrageous requests in the joke don’t in any way reflect a conversation in our lives, the premise of giving the wife everything she wants is definitely at work in our home.
During the few weeks last year before we moved Mom into our home, I was traveling an hour each way to and from my brother’s house to stay with Mom during the day.  There was one day that I had an obligation so we thought Mom would probably be okay alone until I arrived.  By the time I got there, my grandniece had already arrived and found Mom had been outside and fallen down.  We were very lucky.  Mom was not badly hurt but definitely gave my grandniece a scare – something we were trying to avoid.
That night my wonderful husband suggested that we move Mom to our house where we could keep an eye on her 24x7.  Within a week, we rearranged our home to accommodate her and the move was accomplished.
Since that time, it has been a steady progression of “fixing things” as issues arise.  When it became obvious that Mom’s dementia was causing inappropriate behavior in the bathroom, he installed locks on the bathroom cabinets for sanitary and safety concerns.  After quite a few interrupted showers, a half bath downstairs was turned into a full bath so that Mom would have access to the upstairs bathroom at all times.  Mom’s nightly wandering created the need for a gate at the end of the hallway to keep her safe during the night.  When she figured out how to open that child’s gate, he installed a half door with a keyed deadbolt.  At the same time, he installed a lock on my office door so that we can control her access to that room.  Most recently he completed the installation of a half door with a keyed deadbolt at the steps to keep her from going down them unattended.
All the things he has done have made it easier for “the village” to care for her.  That village includes me, her main caregiver, and those wonderful folks that give me the opportunity to get time for myself along the way – my daughters, my sister and the Visiting Angel that now comes on a regular basis.
My husband is a big part of that village – in fact; I could not do this without him!

Tuesday, February 1, 2011

Go or Stay Home?

I recently threw a question out on the Alzheimer’s forum because I have been tossing it back and forth in my mind.  I asked, “How do I know when it is time to just keep her home?”
Mom spent the majority of the last 10 years at home at my brother’s.  She went to family gatherings and my sister would take her to the store every so often but otherwise she spent each day at home.  When we moved her down here with us, I started taking her everywhere with me – the store, visits to friends and family, walks outside.  She enjoyed the opportunities to get out although she never was keen on waiting if I had to “shop”.
Lately it seems that she still wants to “go” but there is always a lot of harrumphing about putting on gloves and a scarf to keep warm.  She always thinks it’s warmer than it is and if I don’t make her put them on, then she harrumphs that it is “so cold”.
I find that once we go, she wants to come back home.  She’s okay at the grocery store as long as we move through quickly and she enjoys going to Max & Erma’s although they better not dawdle with the food!  Those situations aside, it’s visiting that creates the biggest problem.
Last week we delivered a scale to my in-laws.  Mom and Dad, 86 and soon to be 89 respectively, are fighting various health problems.  Mom has been fighting horrible dizziness for months now and has to use a walker while the doctors try to figure out what is causing it – in addition to her chronic condition of lymphedema and history of TIA.  Dad, with a past of cancer and heart bypass, was diagnosed with diabetes a few months ago.  In spite of these issues, Mom is chomping at the bit to get back to the gym to do her exercises and they both are looking forward to a trip south in March to visit two of their sons and daughters-in-law.
We sat down to visit for a bit and my mother-in-law filled us in on what’s been happening and what they are looking forward to.  Mom sat there quietly – she doesn’t appear that she comprehends much of what is said and she doesn’t try to converse.  At one point, my mother-in-law tried to draw her into the conversation and Mom proceeded to tell her that she (my mom) is 104 and has trouble talking.  Mom is 94 but quite often will tell people that she is “100 after all” as if that explains everything.
I knew our time was growing short as Mom started clearing her throat and giving little coughs while staring at me.  If I looked directly at her, she would ask when we were going to leave.  Finally, after assuring her a few times that we would leave soon, she just said, “Can we go home now?”
So, go or stay home?  The jury is still out and I’ll just play it by ear for now.