Long Distance Caregiving

I read a sobering statistic in the new book I'm reading, "Learning to Speak Alzheimer's".  It said that 30% of caregivers die before the loved one they are caring for dies.  I read that the day after I had a conversation with my Dad about how he was having trouble with his blood pressure.  All I could think of was, "If something happens, will Mom be able to get help?  Can she call 911 or at least go to the neighbors to get help".  One of the topics I want to do with the Caregiver Support Group is long distance caregiving.  I might as well share what I learn as I try to come up with contingency plans for my own family.  It would be so much easier if my parents would just let me take over.  And so I join the same dilemma I see over and over again with families in assisted living.  Not so easy when you are in the middle of it as it is looking in from the outside.  Who knows, maybe I can come up with a resource that I can share to be of benefit to others long distance caregiving.  Stay tuned as I work out a process.

Family Dynamics

I have a family at the assisted living right now who are having a time.  Two children with very different personalities, different views on what needs to be done and no-one has been designated Power of Attorney. I try to help both of them and remain neutral in this situation, but I can't help but project myself and my brothers in the same future situation.  You have very capable and responsible adults with different views about what is important for quality of life, what the goals are for medical care, trying to take into consideration what would be their father's wishes and you can't help but filter those through your own personal beliefs.

I hadn't planned on taking a trip to Missouri this year.  But since I will still have 1 more week of vacation to use before the end of the year, I have decided I want to take that trip.  I have seen so many things in the last few months, that I want to try to be proactive as much as possible.  I'd better get my name on the bank accounts so bill paying could continue in the event of a crisis.  I am already named the Power of Attorney.  I'm having an elder law attorney speak at the Caregiver Support Group in September and I hope to find out what other practical things I need to do in advance to minimize problems later.

But what can you do in advance to prepare the relationship piece.  All 3 of us children are intelligent people.  Of course I believe I should have the last word since I am the Power of Attorney and I am a health care professional.  But my brothers are also very strong personalities with strong views and rightly so who may not agree that I would know best.   I also see my cousin who has lost both parents in the last two years.  Her only sibling is giving her a hard time as the executor of the estate.  So not only has she lost her parents, but her relationship with her brother is not good because of these differences of opinion about what should be done.  Is there a way to be sure our parents have the best quality of life and maintain relationships when there may be very different views on what quality of life means?  How do I help the assisted living family members when I don't have all the answers myself?  Why is it there are more questions as you get older instead of more answers?

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.