Role of Support Groups

I have been hosting a support group for Caregivers of people with dementia for about 4 years now.  Attendance is declining and I'm wondering if it is even a useful format any more.  the Alzheimer's Association has a website with so much information.  Maybe in this day online information is what people are looking for?  Then I have the one spouse who attends every month and tells me he doesn't get anything out of it.  Do I need to keep using my time and resources to keep something going that is not helping anyone?  I always felt like there was something important in the connecting of people who are having similar experiences.  I spoke with the one faithful attendee and we talked about changing the time.  I originally scheduled it for afternoon thinking that spouses who are caring for someone would be less likely to drive at night.  We'll try evening and see if that helps attendance.  Maybe I'm just in a funk and need to refresh.  I guess time will tell.

The risk of not making someone angry

So last week a woman died in a house fire.  They stated on the news that she was known to have dementia.  The fire smoldered for hours before it was discovered and the fire department called.  She had been dead for some time by the time the fire was discovered.  In my experience with families, I have to wonder if there had been a discussion about needing some kind of assistance, a sitter, family staying with her, going somewhere else, anything?  It is just a news story and the characters are not known to me personally.  But the situation is one I see over and over and over again.  As the memory gets worse, the person is not making good decisions.  Yet no-one wants to rock the boat and make mama mad by suggesting help.  So instead, she continues on in an unsafe situation.  In many situations, there are not dramatic outcomes such as this.  But I have to wonder and I'm not trying to be a smart alec;  Is it preferable that mama was able to stay in her house on her own, even though she died in a tragic fire, rather than making her angry?

I know it's easy to look in from the outside and make judgments or second guess others decisions.  But why, when we know someone is not making good decisions and we don't let them drive, we manage their finances for them, etc, do we go along with their decision about care?  So the question becomes, which would you rather deal with, making a decision for safety even if it makes someone mad, or knowing something that happened could have been prevented?  It's not an easy choice, but it is real.

Professional versus personal

It is so much easier to deal with individuals professionally rather than personally.  I got called back to work last night with a resident who got in the car and was not going to get out, wanting to "go home".  It doesn't matter that the family are medical professionals.  I hope I was able to convey to the family that's normal and okay.  No matter how much training or experience, when it is your family, the family role takes priority.  I've watched it with my boss, I've seen it with family members of my residents, I know I will be in the same situation in the future.  It is so much easier to come into a situation fresh, having had a full night's sleep, not knowing the person that used to be-only what you see before you at this minute, knowing you will be able to hand off to another staff member that is also fresh and rested and can return to your own home when it is over.

I was also amazed by looking at my past and seeing how everything has come together to make this possible.  I prayed before getting to work, asking for the right words to say.  And when I left last night after calming things down, I realized how right Joyce Meyer is when she says it is so good when you know you are in the middle of God's will for your life.  Oh how tough were those years working with juvenile delinquents and how I felt that was "paying my dues".  But without that training I wouldn't have the skills I now have that made last night's success possible.  Thank you God for knowing what you are doing.  Help me to fulfill your will for my life.

There is no one right decision

I knew it had been a while since I posted, but had no idea how long.  One reason is that I wonder what on earth I might have useful to share.  I attended a workshop session by a neurologist on the latest findings on Alzheimer's Disease.  Now he had a lot of valuable information to share.  But, I feel like this is something God has called me to do.  Who am I to second guess God.   The second reason is that there has been a lot going on at the assisted living, and it has brought up a lot of my own questions.  One of the residents was diagnosed with a terminal illness.  The plan was for her to go back to where she has lots of family.  But the illness progressed faster than expected and now she can't make the trip.

It has brought back my struggle with my parents being in another state and no other family close to them.  Do I try to talk them into moving to our town?  One the one hand, they would be close and we could spend time together while they are still in fairly good health.  And then when it gets bad, they won't be by themselves.  On the other hand, should they give up their friends and activities so we can see them maybe once a week?  I still have to work full time and am lucky enough to have a full time job.  That doesn't seem quite fair either.  There isn't just one right answer.  And even for every family, there are several good possibilities.  I get so frustrated when there are well meaning friends who tell people that the choice they made is what everyone should do.  Too bad it isn't that easy.  There would be a lot fewer stressed out parents and children if that were so.

At the same time, I know what the future will bring.  I've watched other families deal with it for almost 30 years now.  I don't want to wait until Mom can't remember who I am to make the move.  It would be really nice to make some memories that at least I will have before then.  What to do, what to do.

Personality Changes

I was reminded this week how many people understand about the symptom of memory problems with Alzheimer's disease, but don't understand that personality changes can also be a symptom.  I spoke with a couple that were clearly overwhelmed with trying to make care arrangements for his father.  They understood that he was not making good decisions because of the disease.  Yet the son was so hurt by some of the words and actions of his father.  We have developed such keen abilities to make judgments about what people are feeling based on their words and actions.  We do it without thinking.  We continue to use those same skills when someone we love has Alzheimer's disease.  We forget that behaviors and words are the result of thoughts and the thought process is disrupted in Alzheimer's disease.  I've seen so many people who continue to judge the status of their relationship based on current behaviors and words which then causes them so much pain.  Instead, we need to insert a new way of processing words and actions when someone we love has Alzheimer's.  We need to actively remind ourselves that the disease is influencing what our loved one says and does.  And then comes the detective work to try and figure out what they are trying to communicate, which is a topic all by itself.  I guess that is one of the most difficult things about the disease, the individual is no longer the person we knew.

The family ended up needing to find a secure facility and so the man did not come to stay at my assisted living.  The experience was a reminder to me to be sure to inform families about likely personality changes.  I hope I was a help to them and I sure wish them the best as they continue this journey.

Preparing for the marathon

The monthly Caregiver Support Group was this past Thursday.  I was reminded as the participants talked of their experiences, that dealing with dementia is a marathon for families and friends.  Interestingly, my husband is a runner preparing for his first marathon.  His training has a lot to teach me about how to deal with this illness.  One of my worst habits is worrying.  Mostly I think about all the "what ifs".  I tell myself it is so I can plan ahead.  But mostly it is a bad habit that steals my ability to enjoy the here and now by focusing on things that may never even happen.  My husband tells me about how his training for the marathon is just as much about what goes on in your head as it is training your muscles.

One of the women in the support group is such an inspiration.  They have been dealing with Alzheimer's disease for about 5 years now.  Her outlook is absolutely inspiring.  She takes one day at a time and deals with what ever is going on right now.  She finds joy in the every day as she can.  She knows things will get worse, but she doesn't focus on that.  Such a lesson for me, the professional, to learn.  We are early in the illness and things are off kilter, but manageable.  I need to enjoy my life now and not waste the time worrying about what will come in the future.  I need to remember that God has a plan.  Through experience, I know He will provide at the right time.  I need to print out the Bible verse Mathew 6:34 and carry it with me.  "Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own."  I know that for myself, my faith will be an important part of dealing with this illness.  So here's to enjoying today!

Importance of early diagnosis

Mom has not had an official diagnosis yet.  I was talking with one of my assisted living  family members the other day about how frustrating it is when the doctor spends 5 to 10 minutes, doesn't see anything and assumes you are over reacting. Seriously, is this something anyone really thinks I want to be right about?  Of course my dad doesn't want to see it.  He watched my grandmother decline to where she didn't recognize my mother and how hard that was for my mother.  I have one brother that agrees with me, one that does not.  My husband sees it, my good friend said she saw warning signs two years ago at my youngest son's graduation.  But when we are playing dominoes, a game you played with my 20 something children every night during the 8 summers they spent with you and we have to explain where the dime line is every time it is your turn-there is a problem.  You know how many turns there are in a game of double 9's?

Every day I am confronted with people who waited too long to admit there was a problem.  There's the long distance truck driver trying to find care arrangements in a hurry so he can return to his job.  The sister trying to figure out how to pay for care because her brother made some poor financial decisions because of the disease.  The family that now has to go through the court process of guardianship so they can prevent poor decisions.  And every day I have someone call me who knows their loved one needs care but assumed someone else would pay for it.  My favorite was the person who came out and said to me "he doesn't want to use his money to pay for care".  Oh how I wanted to say "Well who's money would he like to use?"  Medicaid is getting very strict on individuals needing to have skilled nursing needs in order to qualify.  So many people out there stuck in very bad situations because they were in denial, didn't want to offend their loved one, on and on.  So no, I don't want to be right about the diagnosis, but I don't want to end up making decisions in a crisis like so many people I talk to every day.