It's different when it's personal

During my weekly phone call to my parents, I let myself become annoyed.  We were talking about my job, which is unusual in itself because I usually spend an hour saying, "yes, uh-huh".  And my Mom made a comment about how terrible it was.  Here is the person who has championed my career for years and in fact raised me to believe your career was the most important part of your life, now criticizing my helping profession.  I let my emotions get the better of me and I flipped off, "no it would be much better to let someone stay at home who was not safe and let them start the house on fire and die unnecessarily like someone did here locally a few weeks ago, than to have them move to assisted living".  Then as usual, looking back on the conversation, (and after reading a chapter in a new book I got called Speaking Alzheimer's) I realize that the same job she once praised me for and was so pleased about when we were both younger, is completely different now that it may apply to her.  When she said, it is terrible to think about giving up everything you have and living in one room, she was realizing that is an option she may soon be facing.  My problem is that I have to figure out how to have these insights before it is too late instead of realizing after it is over.

I think my only hope is to rely on the wisdom of God and pray for insight before I call.  No matter how many years of experience I have in the field, I need the wisdom and leading of God to handle this the right way when it comes to my own family.  God grant me the wisdom before the conversation, rather than after.

Guilt, guilt and more guilt

I think guilt must be the one constant when you are a caregiver.  Are you doing enough, are you doing the "right things", should you be doing something different?  My guilt this week involves how different it is as a family member compared to being a professional.  I can listen to assisted living residents tell the same stories over and over and have patience unlimited.  But when my mom starts to launch into the same stories I've heard over and over, my patience wears thin.  Then I feel guilty.  I've told family members a hundred times that things are different when it is your family that has dementia, even if you have lots of experience with others.  And I see first hand how true that is.

My mom is a talker.  She has a tremendous need to talk a lot, the typical extrovert.  This was true before her memory started to slip.  Now that she doesn't remember she has already told you the story, a lot means for hours at a time.  I am not a talker and I need quiet to recharge.  So every week when I call, I hear the same stories over and over for an hour or so. I get annoyed and then I feel guilty.  I know in my mind I should be thankful.  We are in the early stages, she is still able to carry on a conversation, she still knows who I am.  So how do I fix this?  In my devotion time this morning I'm reading how sometimes God allows us experiences, some would call trials, that enable us to comfort others as He comforts us in our trials.  I can tell you that I certainly understand better how the most intelligent, health care professionals can function just the same as the average man on the street when it is their family member that develops dementia.  Maybe that is the lesson to be learned?

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.