Mentoring for New Caregivers

Mentoring for New Caregivers

            We who have long experience and knowledge can be supporters (mentors) for those new to dementia caregiving.  It matters, of course, how much experience you have caring for someone with dementia.  And also how much breadth of knowledge about different those with dementia can be.  Such breadth comes from interacting with others with dementia and from other sources, including reading material, video material on Youtube, and information from others in a support group.

            If you have been an involved caregiver, others may ask for your help.  Pitch in as much as possible and keep learning.  Mentoring is a subtle process; it is more than advising, teaching, or even coaching.  Most important is to be collaborative with someone so they learn essential skills and knowledge in a broad, functional way.  Central skills for mentoring are active listening (complete focus on what they are saying), asking open questions, and beomg empathetic.  Straight direct advice is not usually best; if they are dealing with an issue, it is better to engage him/her in a problem-solving approach.  Ask for more specific information.  Then ask about what efforts they have tried and how and why that was not successful.  Then you and they will suggest solutions as you both work through how to address this problem.

            Examples:  These are created fictions to illustrate points about the Mentor’s approach to be best help for a dementia caregiver.  They are all based on many specific situations I have encountered.

I.                Wandering

John: I have to go into the office a few hours most days.  While I am gone, she leaves the house and is soon completely lost.  Sometimes a neighbor sees her and helps her get home.  Other times I drive around until I find her.  And when I can’t find her, I have to call the police.  They find her and suggest that I will need to find a way to keep her at home.

Mentor:  So what have you tried?

John:  Of course I asked her to stay at home and watch TV until I get back.  But she just forgets; this is Alzheimer’s.

Mentor:  Yeah, that’s for sure.  I remember those days. 

John:  Well, of course, I have asked all of the neighbors to keep an eye out.  As I said, that may work, but only part of the time.

Mentor:  What else did you try?

John:  I put a special lock inside the front door.  That worked for awhile, but then she figured out how to open the lock and got out.  And the problem with a lock is that it might keep someone essential out, say emergency help.

Mentor:  Yes, that’s certainly right.  Can you do your work from home?

John:  I have done more of that.  But in my business you have to meet with clients and it won’t work to have them come to my house.  And I have our daughter come sometimes when I am out, but that’s not enough.

Mentor:  Yeah, she has other needs.

John:  Yeah, her family and her job.

Mentor: There are services that send someone for a few hours.

John:  It would be hard to pay for much of that.

Mentor:  I’ll help you find places that can give a grant to pay for those services.

Etc.

II.              Driving

Mary:  I am so concerned about my husband Paul’s driving.

Mentor:  What’s happening?

Mary:  When I am with him, his driving is erratic—sometimes weaving and definitely not aware enough when changing lanes.  He had a small accident last week.  I told him not to drive any more and he said, “Oh, I’m OK.  And I need to drive to do the shopping and meet my old buddies for breakfast.  And we want to visit our daughter and grandkids.”

Mentor:  Have you tried anything else?

Mary:  Not yet.  Our son thought we should disable the car, but then I could not get anywhere either.  I hid the keys, but then I have to get some groceries and he knows.

Mentor:  Wow!  This is a tough problem.

Mary:  Yes, I am frightened about what could happen?

Mentor:  I hear you about that.  That’s something to be afraid about.

Mary:  Do you have any ideas about what could work for us?

Mentor:  Did you know that the law requires that someone in his situation have a driving test?

Mary:  That’s what the doctor said, but we didn’t do anything.  Afrerwards said, “I don’t need to do that.” How could I get him to do it?

Mentor:  Yeah.  He’s not going to do that because you tell him so.

Mary:  What else could I do?

Mentor:  First talk to his doctor privately, expressing your concerns.  She should have some ideas.

Mary:  Like what?

Mentor: Maybe she will tell your husband that she (the doctor) is legally obligated to make it a requirement for your husband to take the driving test.  Maybe make it easier by saying that you should both take the test.  She could even write out that requirement and give you some places they do that.

Mary:  That might work.  And if he is told he can’t legally drive, he might understand.  I really hope that works, as I don’t want to disable the car and I really don’t want him to have a serious accident.

Mentor:  Like so many issues, you might want to find other resources, like…(see Resources blog).  And for many people, a support group would be great.  There are many around, including Alzheimer’s organizations, County/State Senior Centers, etc.  There are some that are online, so you can participate even if there is not a group nearby or one that fits your schedule.

III.            Medications.

Tom: I worry about Mom’s medication.  Even if the dementia is very early, she can’t seem to remember to take them.

Mentor:  What have you tried?

Tom:  We put all of it in dispensers and labeled everything. But she needs reminders , so we set an alarm to go off every morning and evening.

Mentor:  How did that go?

Tom:  So a few times at first she called and asked “What is that alarm for?”

Mentor:  Yeah.

Tom: And then we’d go there and some were not taken.  Even though the days were labeled, she just took the pills from wherever.  So then I called every morning and evening and talked her through it.

Mentor:  Great!

Tom:  And, of course, when I was at her place at the right time, I could help her.  Then she started complaining about this one pill.   She said, “It tastes awful, so I just throw that one in the trash.”  I looked it up and it is one of her heart medications. 

Mentor:  So it might be dangerous to quit taking it?

Tom:  Yes.  Of course, I could put it in the middle of a cream puff and that was fine.  Maybe I should ask her doctor if it can be in a capsule or there are other choices that are not so bad tasting.

Mentor:  That makes sense.

Tom:  I wish I could count on her taking all of those medications every time.

Mentor: Did you talk with her doctor about all of her meds and which one were not necessary?

Tom: No.  I should.  And we also need someone there every morning and every evening to see that all the pills are taken.

Mentor:  How could you get someone?

Tom:  Maybe my two sisters and I could rotate through so one of us is always there for meds..

IV.             Memory Care facility?

Jane:  My friend, who has lots of experience with dementia, said I should consider putting Dad in a Memory Care facility.  Why would she think that?

Mentor:  That’s a tough issue.  What is happening with your Dad?

Jane:  He seems to be getting angry more often and he is hard to calm down.

Mentor:  What does he do when he’s angry?

Jane:  He hasn’t hurt anyone.  But he gets face to face and is threatening; his voice gets very loud.

Mentor:  What sorts of things make him mad?

Jane:  If we tell him what to do that he doesn’t like or if we try to argue with him about something, like taking his medications.

Mentor: How do you calm him down.

Jane:  We just stay calm and never disagree any more.

Mentor:  That often works, I know.

Jane:  Yeah.

Mentor:  Have you thought of other ways to manage the anger?

Jane: Yes, I know that there are therapists I could work with, the ones who specialize in older people and the problems of dementia.

Mentor:  Definitely.

Jane:  And we have a doctor who knows a specialist and might have medications to calm things.

Mentor:  That could help.

Jane:  And almost every day he is angry about Mom, my Mother.  He wants to know where she is and is very upset.  She died 3 years ago.  If we tell him she died, he is so sad, but he forgets that. Then the next time we tell him she died, he cries and gets upset, so we don’t want to do that.

Mentor:  What else could you tell him?

Jane:  Maybe that she is shopping and will be home soon.

Mentor:  That should help.

Jane:  But then she doesn’t come home soon.

Mentor:  By then he won’t that you had that conversation earlier. So just say it again.  Or at night, you could tell him that she is over at your brother John’s to help with the baby, so she will get home late.

Jane:  But there are other issues, too.  He is living alone and can’t be trusted to cook for himself since he has often left the stove on.  The house is very messy and dirty, even smells.  He is having problems with controlling his peeing.  So he changes clothes, but can’t do laundry any more.

Mentor:  Those are definitely issues that lead to a Memory Care institution.  But that is very expensive.  Have you thought about other ways to manage?

Jane:  Yes, we can bring him food we have cooked and try to keep that stocked up.  Maybe we should pay for some housekeeping to keep things clean and orderly and do the laundry.

Mentor; Yes, I like that.

Jane:  How would I know that it is time to get him into an institution?

Mentor:  That is a complex problem.  You are raising the kinds of issues that matter.  Of course, as long as you can find simpler answers, you can avoid an institution.  He is probably happier at home and you will be happier to have him there.  Still, as these and other problems continue to grow, it may come to going to an institution.  A hard decision.  And a hard transition for him and the family.

Jane:  That’s true.

Mentor:  So I’ll continue to try to help by being support for you and your family and really by helping you think about the issue.  But I should not be the one to make that decision.  That is for the family. Let’s come back to this issue as time moves along.

            These are just a few of the issues that may develop for the caregiver of a person with dementia.  Clearly there is no single pat answer to any of these.  Notice that the mentor is giving great attention to what the caregiver says and keeps a continuity across the conversation.  And the mentor is asking open questions (rather than yes/no or questions with a simple answer) and following up the question/answer sequence.  And the focus is on problem solving.  These are only a few of the many kinds of issues that come up for caregivers, so this approach is applicable over many situations and crises.  The best answer for each problem depends on so many aspects that a mentor cannot just throw out the answer.

            It is clear that there is a collaboration between the caregiver and the mentor.  This requires some time, but it brings the caregiver into a more thoughtful, engaged approach than just hearing an answer.  Someone advising Paul by simply telling him to put an extra lock on the door could miss an approach that works.  Similarly, telling Mary that the answer is disabling the car might leave her wondering how she can get better support than what this Mentor is saying.  Or, as with Tom, there are many parts of the medication issues, as with any of these issues.  In all scenarios, there should be empathy in reactions to the problem and the caregiver’s efforts.  Consider how the mentor responds to Jane, again trying solve a problem together.  And not make decisions, especially those that are complex and major.

            I have one striking event of my own mentoring.  And, while it may make me out as a genius in this regard, I know that many others could do as well.  The secret was exactly what was discussed earlier:  total focus on listening, with appropriate questions, and empathy (especially in this case).  There is no transcript, so you will have to trust my memory.  I was talking by phone with a woman in another part of the U.S.  The conversation was a direct result of the commonality we had previously shared that her husband had died of Alzheimer’s and my wife was in late stages.  When I started this conversation, I presumed we would mutually show empathy and sympathy.  So I told her about my wife’s situation and the many years of dementia caregiving.  Then she told me that she had cared for her husband for a long spell, too, for 7 years and that he had died around 7 years ago.  Then, dramatically, she talked about how she had been unable to cry since his death and how she could not seem to remember who he had been before dementia.  I was listening and engaged; I was supportive and empathetic, but there was no attempt to provide “counseling” or even suggest that she should cry.  We hung up after an hour of this discussion.  The next morning she e-mailed me, saying that she had finally cried and that her memory for who he was prior to dementia was returning.  They had had a very long and happy marriage and there was much to remember.  As I clearly recall, this was essentially about m listening and being supportive, but that was valuable for her. 

The person with dementia will likely die before the caregiver, whose grief will have been very prolonged in anticipation and still very powerful at the time of death.  And someone who is mentoring should be prepared for that.  And it is very worthwhile to manage the last few weeks or so and the death with the involvement of hospice.

            Everyone mentoring a dementia caregiver needs to find out about the above, and many other, issues that will come up.  How would you learn about helping someone find an agency that will send someone out to sit with the person with dementia for a few hours every day?  Or make decisions about which facility?  Or find a physician with the specialization in managing the person with dementia?  There are many resources to help you if you get in a mentoring role.  The National Institute of Aging has many free pamphlets, your state and county have information and even financial help.  I strongly recommend the book published by the Carter Institute titled Dealing With Dementia (there is another with the same title, so find the right one) and the 36 Hour Day (current edition).  More details about all of this are provided in the blog “Resources.”

            Mentoring for a caregiver of a loved one with dementia is tough.  Even when very informed, you cannot know everything.  Time with a new caregiver should be mutual thinking about solutions, realizing that the problem is likely to continue with new solutions needed.  And, of course, check out the many resources after you leave a meeting with the caregiver.  YOU CAN MAKE AN ENORMOUS DIFFERENCE!