Finding the Balance between Safety and Self Esteem

It is 10 am the morning after Thanksgiving.  Although I worked Thanksgiving day, there is still a lot to catch up on after a day off in the middle of the week.  Not only that, but I have a water heater out on one hall.  And then my cell phone rings.  It is mom.  I can tell something has happened.  That is usually what precipitates a call during the middle of the day in the middle of the week.  She starts talking about how she is not an imbecile and people keep treating her like she is.  I have the maintenance supervisor standing at my door.  What a great deal to be a working woman.  I used to feel torn between my job and taking care of my children.  Now I feel torn between my job and being there for my mother.  I think I've mentioned before, but my boss is really great about me talking to my mom when she calls.  My boss is one step ahead of me in every respect, mothering, career and having a mother with dementia.  Her mother has now progressed to needing to be in a skilled facility.  I know she would love for her mother to still be able to pick up the phone and call.  So it's not that pressure.  Yet there is the maintenance supervisor and hot water is pretty important to my residents.  I have to hand up and call again.  Yet I know I may never really figure out what happened if I hang up now.  But hand up, I do, and call back again just before lunch.  I get the answering machine.

On my way home from work, I call back.  Whatever happened this morning is no longer pressing.  Reading between the lines, I can figure out that dad has gotten frustrated about something.  She does not recognize any kind of impairment at this time.  She talks about "the stroke".  I usually focus on that as well because it is concrete subject she can understand.  I know there were symptoms of memory loss 2 years before the stroke.  But at this point I don't think it really matters what we call it.  Her brain has problems.  She can understand a stroke impairs that brain.  We have the same conversations again, I had as good a job as your dad and made as much money, the doctor said I shouldn't drive but I still have my license, people don't talk to me now, they only talk to your dad.

I have to admit, even though I deal with this 8 hours a day at work, it takes a lot of deep breathing to listen over and over again with my mother.  I really don't know how caregivers in the home do it 24 hours a day, 7 days a week.  I am frequently coaching staff on how to make sure residents have their needs met, yet being respectful and treating them like adults.  I also know my dad and patience has never really been his strong suit.  Combine that with my mother's long standing need to be the center of attention and now she can't remember that just 5 minutes ago, he was there with her doing whatever.  And then there is her long standing personality trait of obsessing about things.  The memory loss has just compounded that trait (and I am finding I have inherited that trait myself).

I hope all of this will make me a better facilitator of the Caregiver Support Group.  Although I am the "professional", I am realizing more than ever that I really don't have all the answers.  Will that be discouraging for caregivers at the group?  I hope not.  How do you mitigate the feelings of inferiority because of someone else having to make decisions and do the daily tasks?  I don't know.  I do know my dad has to be able to work in his workshop in order to deal with his stress.  I'm glad my mom is at a place where she is ok in the house by herself.  This is sometimes more discouraging for me than encouraging as I realize I have many more questions than answers.  Which brings me back to the whole point of this blog.  No matter how many years of professional experience, when it is personal, it is a whole new ball game.

Unfortunate stigma of psychiatrists

I find over and over again how helpful a good psychiatrist can be when trying to manage some of the negative behaviors that can show up when someone develops dementia.  I worked in geriatric mental health for 7 years and found that all these years later, there continues to be the stigma attached to anything mental health.  So many still believe anything mental health related is a matter of will power, especially those of the older generation who are now the prime age for developing dementia.

One of my residents with early dementia has been plagued by an underlying low level of agitation all the time.  Not only does this disrupt his relationships with residents and staff at the assisted living and his family members, but it has got to be distressing for him as well.  Fortunately, he has a wonderful family who is willing to seek out whatever help they can find.  Their situation reminds me how important personal choice and relationship is in any physician relationship.  They did not click with my favorite geriatric psychiatrist.  But they did try a couple and find one that both the resident and family members feel a better connection with.  I know with my mother, she was okay with the psychiatrist, although he made what she felt like was a criticizing comment.  My dad, on the other hand, felt like he was arrogant.  In my parents case, the psychiatrist made medication recommendations which the primary care physician not prescribes and follows.  Given their feelings about him and their positive relationship with the primary care physician, this is probably the best case scenario for them.  On the other hand, I have seen first hand a number of primary care physicians who are not specialists with psychiatric medications, much less the issues that effect the elderly, who really just blunder about with medications.  A specialist would be much more effective.

Not that I advocate "drugging" people up.  The most recent research verifies that the best approaches to manage typical dementia behaviors are lifestyle  and environmental changes.  I think anyone would agree that non medication changes are always the best first course.  However, I have also seen how effective a simple mood stabilizing medication can be in giving people a better quality of life.

One of the very positive outcomes I have seen with the Caregiver Support Group is the advocacy by family members for seeking out a psychiatrist for the treatment team.  A big thank you for the psychiatrists out there who seek to stay at the forefront of research on medications for seniors and seniors with Alzheimer's and dementia.  Even after all these years of trying to destigmatize mental health, I guess family members with positive experiences are still the best support for other caregivers struggling to find the best quality of life for their loved ones.

Should- the most destructive word in the English language

I have frequently felt "beat up" by the word "should" in my adult life.  I should do more for my children.  I should put in more time at work.  I should put aside my own interests to support those of my husband, my children, my friends.  I'm sure I will continue to wrestle with realistic and unrealistic expectations of myself.  But I hate to see what that word can do to others.

I know my dad is not considering moving because he thinks he should be able to provide 100% of the care for my mom for ever.  And I know he feels that he shouldn't burden me or my brothers and our lives to help.  It doesn't matter that we would gladly be willing to be a part of the caregiving team.  I don't know that any of us will ever be able to make him see that.  That expectation is so firmly entrenched in his mind.

Then this week that word attacked again.  We had our monthly caregiver support group meeting.  One of the caregivers that is a role model for caregivers everywhere revealed her "should".  This woman has been caring for her husband since his diagnosis in 2007.  She does get sitters to give her 2 days off during the week to run errands and have time with her friends.  But other than those limited hours, she is providing 100% of his care 24 hours a day.  Not only that but with an unbelievable attitude.  So at the support group meeting she says she feels like she should still be taking her husband to church.  She doesn't because the effort involved to get him ready and there has become monumental.  And again, she could be a role model for other caregivers, yet she beats herself up because she thinks she should still be doing more.

Maybe this has given me an idea for the next caregiver support group.  Maybe we should talk about all those "shoulds" that are so damaging to people.  It is one thing to deal with it myself.  But it truly breaks my heart to see someone who could be caregiver of the year, still feel they aren't doing enough.  I pray that in the next couple weeks, God will reveal what I can do to help caregiver's not be so hard on themselves.

Once again my Role Model

Of course as children, we are usually looking up to our parents as role models throughout our lives.  One might think that as an illness such as Alzheimer's takes its effects, the opportunities for a parent to continue to be a role model lessen.  Not true if you are honest with yourself.

I have been a worrier for years.  I don't know how many years.  I worried about my husband being killed as he served in the Army.  I worried about my children, their health, their welfare, their friends, their religious training.  A couple years ago, I had a resident who was also a worrier.  I told her I was just like she was, if we didn't have something to worry about, we would find something.  So when my husband suggested taking yoga a couple months ago, I was interested in not just the exercise component, but the stress management and mindfulness aspect of it.  I love the focus on the here and now, the focus on the breathing.  But to be honest, I really have to work hard to stay in the moment.  As I wrote in an earlier post, I am always focused so far into the future, I miss out on the here and now.

So today in our weekly phone chat, I was stuck by how completely content and in the moment my mother is right now.  There are still the rehashing of her work career, probably 3 to 4 times during each weekly phone call.  And I do hear about the here and now probably 3 times a call as well.  But it is amazing how completely at peace and content she is with her cats and my dad.  There is a goal I would like to set for myself.  I am always looking at books that have the titles about "living simply", "slow down", "live in the moment".  I don't have to buy any books on the subject.  I have an example to follow right in front of me.

I'm so thankful to recognize the abilities still there and the opportunity for me to continue to learn from her.  I hope I can continue to plan for the needs she and my dad will have in the future, but to keep my focus on the here and now, to enjoy the present and not miss out.