I wish it was like it used to be

"I wish it was like it used to be", she said with tears in her eyes.  One of the assisted living resident's dementia is progressing and she will have to move to another level of care soon.  Her family had talked with her about the move a couple days before.  She has had periods of tearfulness throughout her stay with us.  so it is hard to say whether she was speaking about the upcoming move, the loss of her husband, which we are not sure she actually understands, or where she is in her mind that has caused her to be  upset.

As a 16 bed assisted living, we trim every possible expense by having me do as much as I am able.  So most days find me running most of the day.  This was one of those times that I knew I had to stop and just listen. Also because we are only 16 beds, it is easy to get attached to our residents, especially someone who has been with you for several years.  Although I haven't yet read much about it, I like the premise of the Best Friends approach to dementia care.  So in that spirit, we just sat together.  I do where she was in her mind and she wasn't able to tell me.  But as a friend would do, we just sat together.  It's days like these that I love my job, yet find it very taxing.  Did I make a difference?  I don't know.  but I do know it was the right thing to do at the time.  And with such a daunting task, I guess that is the best I can hope for.

I wish it was like it used to be too.  I wish I was wrong about my mother.  I wish she was still the witty, well-read, debate a topic on a minute's notice person that raised me.  I wish she was still the caretaker and I was the care receiver.  But it's not.  Right or wrong, just or unfair, this is the hand we've been dealt.  I pray for the strength to move forward and continue to do the right thing, both at work and with my family.  But maybe I will take time now and again to remember how it used to be and to savor those memories.  Hopefully not to dwell on the loss, but to remember with thanks all I've been given.

The Face of Courage

She's been a volunteer at the assisted living for at least the 5 years that I've been there.  First, teaching Sunday School once a month.  Then for the past 2 years, playing the piano for sing along each week.  One day, the leader of the Sunday School group comes to me.  He asks me to keep an eye on this teacher.  She seems to have been having trouble with her memory lately and they are concerned about her.  This past week, I half listen to the Sunday School lesson as I work in the office on the computer.  She says to the residents, "I'm going to be forgetting things so I have started writing things down".  What? I listen more closely.  "They tell me as the disease progresses, I will forget things.  I could ask God why me, but I'm not going to do that.  None of us knows what tomorrow may bring.  I will keep on what I can for as long as I can for the Lord."  All this is said with the same smile on her face as when she shows us her latest photo or art project.

I don't know that I could do what she is doing.  I don't know how I am going to handle my mother's illness, much less what I would do if told I had dementia.  This is the face of true courage.  Moving forward in spite of circumstances, vowing to do your best for as long as you can.  This is a true hero and I vow to recognize these heroes when I have the chance.  Because none of us knows what tomorrow may bring.

Unfinished Business

This week, one situation brings to mind 2 thoughts.  Ever since reading the book "1000 Gifts" by Anna Voskamp, I've tried to cultivate an attitude of gratitude for the many blessings I have that get overlooked.  The research says doing so makes people happier.  As devastating as the diagnosis of dementia is, there are blessings if you look for them.

I worked for 4 years in the hospice field.  Not my calling, but as with everything God has placed in my life, a valuable learning experience.  I learned that knowing your time on earth is short allows you to take care of unfinished business sometimes.  A gift those who die without warning don't have.  So one of the things I hear my mom express regret about is the break in the relationship between her and her only sibling, her brother.  Now the reason for the break is obvious.  He was a jerk and trying to grab more than his share of the fruits of my grandparents lives.  Yet I can only imagine what it must feel like to be estranged from the one other person in the world that is your blood family.  So here I identify gift #1- my brothers and I have good relationships.

Pretty much out of the blue, my middle brother gets the opportunity to make contact with our uncle in a way where my brother can try to negotiate reconciliation if possible, without subjecting our mother to more emotional heartbreak.  Gift #2 & #3- God works in mysterious ways, but His ways are perfect.  This brother has the right skills to be the person to handle this contact and the opportunity was presented to him.  So he will pursue contact and see if reconciliation is an option.  That, of course, would be gift #4, but we will have to wait to see what happens.  Gift #5, having the opportunity while she is still able to resolve what might be unfinished business.  It occurs to me as I write this that we would all be wise to take note.  Not everyone has the opportunity to know their time might be short.  We would all be wise to look for areas of unfinished business in our own lives and work to resolve them if possible.  Secondly, I better take note and work to do all I can to make sure I keep a good relationship with my own brothers.  Thank you God for sharing your wisdom with my and for sharing it in little bits that my finite mind can comprehend at one time.

Hero of the week

What one milestone signals the reaching of adulthood more than getting your driver's license?  I would say nothing.  No wonder telling an elder they should no longer drive is such a cause for relationship problems and  self concept problems for the elder.  And how dare the whipper snapper whose diapers you changed dare now try to tell you what you should or should not do.  I have seen over the years how this one topic has been a root of serious relationship problems between a parent and a child.

So my hat is off this week to the doctors with the courage to be the ones to tell an elder they should not drive.  About a month ago, my mother's doctor told her she should not be driving.  After the psychological testing was complete, she told my mother in no uncertain terms she should no longer drive.  My mother thinks it is related to her stroke and she thinks it is not permanent.  And there is no point in telling her it is permanent.  All that matters is that she knows at this point in time she should not drive.  My mother was somewhat taken aback at how "stern" the doctor was in making her point.  Good for her!  I explained to my mother how you could stand to lose everything you had worked for in your life if you don't take the doctor's determination seriously.  Fortunately my mother follows the advice of the experts.

Over the years I have seen how much more difficult it is for a man to give up driving.  The loss of independence, of being strong & self sufficient is extremely hard on the self concept of men.  This week I had a new resident go out driving 2 days in a row and get lost.  Thank you, thank you, thank you to his doctor who immediately made the decision for the family and the resident that he should no longer drive.  In the past, I've seen so many doctors opt out of that discussion, saying it is a family matter.  Thank you to these 2 doctors who have the courage to do what is right, not only for the patient but for the community and ease the burden for the family.  There are enough difficult decisions for the family to make.  Thank you for being on the team and "taking the heat" for this very serious, very important issue.

Glad I'm not God

It's been a tough week at work.  One of the residents that is in the middle to late stages of dementia fell and broke her hip.  Broken hips are usually bad news.  Elderly folks break a hip and frequently don't regain their previous level of functioning.  Elderly people with dementia who go under anesthesia really don't fare well.  So when I go to pray for this resident, what do you pray for?  I'm so glad I'm not God.  I can't possibly imagine what the best outcome is for this resident and her family.  I would prefer to do what I feel I'm called to do in my own little corner of the world.  I just hope what I do does make a difference.

Smattering of topics

We just got back after a flying trip back to see family and another short vacation.  Mom has been on Aricept now for about a month and I can tell a subtle difference.  Even she says she can tell a difference, although she believes she is recovering from the stroke.  She still forgets things about 5 minutes after they happen, but it is a subtle personality change that I could see.  I don't know how to explain it other than her personality doesn't seem so shallow now.  That could be because the last time we saw them, in November, her obsession with her cats was almost constant.  Now she was able to carry on a conversation for quite some time without talking about or looking for the cats.  She still has periods where she gets focused on where the cats are and asks Dad repeatedly to go look for them, even though they were located within the last 10 minutes.  He gets frustrated and ends up by yelling.  I know he ends up feeling like the husbands that attend my Caregiver Support group, he gets frustrated, explodes, then feels guilty.  I think I'm going to create a spreadsheet for them where every hour he can write down where he last saw the cats.  Then maybe if she sees it in writing, it will calm her until the next hour.

The exercises that she is supposed to be doing following the stroke are an issue as well.  She thinks she is doing them.  He reported that the week before she did not do them for 4 days out of the 7.  I've noticed one of the issues she has is that she will talk and talk about doing something but just can't seem to get the impetus to actually do it.  For instance, I gave her oil paints for Christmas.  She says she has been too busy to use them.  I guess she is busy looking for the cats most likely.  I have a new resident that is going to move in that is in the same point.  He has great daughters who want to support him but not take over.  I was telling one of the daughters the other day that they are going to have to give him a nudge because he just can't do the planning and follow through required on his own.

Speaking of families, this week has been tough because I have a resident whose dementia seems to be progressing after doing really well for several years.  I look at one of her children in particular and I can see the pain of watching his mother become someone he doesn't even know and his losing the mother he did know.  I actually said out loud to myself the other day, "maybe Mom will have a big stroke and it will be all over before it progresses to that point".  That is very unlike me.  I have prayed for years for God to give my parents health and long life.  I don't feel ready to be the foundation generation yet.  But maybe losing her quickly would be easier on us all that losing her slowly.

So after a short break, I'm back, asking God to help me help residents and their families and to give me the wisdom to know what to do with my own family and the strength to do it.

Avoiding hospitalization

The latest edition of Care ADvantage, the magazine put out by the Alzheimer's Foundation of America, had an article about trying to prevent hospitalizations for individuals with Alzheimer's and how to make the best if someone does go to the hospital.  I saw first hand this week another aspect of what happens when someone with dementia goes to the hospital.

One of the residents at the assisted living went to the hospital about a month ago.  It was not a preventable situation.  While in the hospital, she did not get up and walk.  So after addressing the issue that sent her to the hospital, she needed a rehab stay at a skilled nursing facility because she had lost so much strength and ability to walk on her own.  So off she goes for the famous 21 day stay at rehab.  I understand why it happens, yet that doesn't make it any easier to watch.  While at both the hospital and rehab, she was restricted from walking except when there was a staff member to walk with her.  Because of her dementia, she was not one to use the nurse call system when she needed to go to the bathroom.  So if she didn't call, they didn't walk her to the bathroom.  She walked during the physical therapy sessions, but that was about it.    And I firmly believe the old saying, if you don't use it, you lose it.  And she did.

The staff at the skilled nursing facility told the family that her inability to walk now (when she was slow, but able before going to the hospital and the reason for the hospitalization had nothing to do with her walking) and the fact she was not feeding herself was because the dementia had advanced.  Now I can't see into her brain so I can't say it wasn't.  I just think it was more a function of how the system is set up that isn't beneficial for people with dementia.  First of all, I don't like to just write a decline off to dementia progressing.  I think that can be an easy explanation for people to fall back on.  Secondly, I have worked in a skilled nursing facility and I know with the pace there, it can be much more efficient to just do things for a resident, feed them, wheel the wheel chair to the bathroom, or just change pads if they don't make it to the bathroom.  And I'm not against facility care.  I know there is a need for it and I know there are lots of facilities out there that are really trying to do the best job they can.

So when I went to evaluate her for coming back to assisted living, she was not in any shape to come back.  We are lucky in assisted living because even though we see our residents decline and need a higher level of care, we don't watch them deteriorate to the extent I did when I worked in a skilled facility.  That doesn't mean it isn't hard to see.  Not only was it hard for me to watch while she ate when fed, but not on her own, but I could see the future for my own mother as well.  It used to be when I first started in long term care, I accepted people where they were at the time and it was okay.  I hadn't known them in the younger days as young wives and husbands, parents, grandparents.  All I knew was how they presented at that time.  Now as a family member myself, I understand how hard it is to watch the person you once knew disappear.  And just as hard is the saying good bye to the family member that has become a part of your family as well.  Giving the daughter a hug, her looking you in the eye and you both know this move out of the assisted living is the beginning of the end.

I do love my job and I love being able to help residents and family members.  And I guess if I really didn't care, then it wouldn't be so hard to watch a resident decline or have to say good bye to a family member.  I just pray this experience helps me to be a better person, to be a better care-giver, to help families more and to be better at caring for my own mother.