This post is just to reinforce the idea that using a baby monitor to check on caregivers is a great idea if you can manage it. I had it on my list and wish I'd done it earlier. (Live and learn....)

Yesterday I finally got around to setting up a baby monitor so I could check on how the two caregivers relate to my partner when I'm not there. Recently I often go to work in a building about 100 feet away from our cabin. I was pleased that the monitor reaches that far. (It's the "Fisher-Price Long Distance Baby Monitor, 900MHz - White/Grey, " $36.95.

My partner was fairly upset this morning so it was a good time to listen in. I wasn't pleased with the caregiver's responses. She's good when it comes to safety and physical health and a certain amount of low-key, entertaining activity. But she's not cutting it when it comes to emotional responses -- acknowledging my partner's feelings, showing real caring and tenderness, etc.

So I talked it over with my partner and we decided it would have to be this caregiver's last day with her. We both felt relieved to have made a clear decision. It was the monitor that really helped me know what to do.

Ok,,so now you let the caregiver go,,,,now what? And also,,,you do realize that as time passes and your "partner" progresses,,,she will never like or be happy with anyone else around her,,including you possibley.

Believe me,,we all know here,,,just what you're going thru. I do hope that you interview another person for the posistion,,and keep that monitor close by you. Best of luck. Peace

I'm kind of wondering why you talked it over with your partner if she's impaired.

I would think listening in would have been enough to give you your answers. Then you could just tell your partner that the caregiver had moved on when you introduced a new person.

I do think the monitor is a good idea.

Both the above replies shocked me. As far as later on goes, we'll deal with "later on" later. I need to handle things in relation to where my partner is now.

It may be that at some point my partner will "never be happy with anyone else around her" but that's not a foregone conclusion. I keep reading books that tell about moments of happiness even in the latest stages. To be as ready as I can be if the worst happens is OK, but to expect the worst would be a mistake.

Remember all the stories about teachers who are told that certain students are bright, others stupid? The students fulfill the teacher's expectations. The same can be true of people with memory loss; the caregivers' attitudes can reinforce what the person can do, or diminish it.

At any rate, right now my partner is well able to interview caregivers with me, and she has the final say as to which ones make the cut.

Isn't it a basic principle of caregiving that we set things up to facilitate the person's use of any capabilities he or she has? Given that, it would be a terrible abuse of my power to hire or fire a caregiver without consulting my partner.

Caregiving and care coordination can bring us very thorny issues and concerns.

I can see how strong an advocate you are for your loved one and that is to be commended. We all would want no less for ourselves if we were in such a situation.

My mother had dementia over a 12 year period and my step-dad now for about eight years. Like you, I have faced multiple care aide challenges, especially because my mother was alert and mostly oriented until well in the final stage of her disease.

However, though Mother could let her wishes and opinions be known, her judgment and reasoning were certainly compromised. Mom also was NOT easy to care for. (Understatement.) Therefore, though I always honored Mother's opinions, there were times and later this became permanent, that she was way off base and I had to make unilateral decisions.

The most important fact I have learned is, nothing and no one is perfect. No one care aide or care facility will bring perfection to the table over the long haul. And certainly, we ourselves are not perfect.

That being said, there are certain lines that we each decide we do not want to cross. Those boundaries may be different for each of us, and the way we handle the challenging situations may be different with each of us. There's no right or wrong; just what is best under our circumstances and challenges as they exist.

As we all know, it can be terribly difficult to be the care aide of a person with dementia month in and month out; year in and year out. If the person is in a NH, there are multiple staff members who assist one another with their work, and they work as an aide for one shift only with rest and lunch breaks. They have days off and holidays.

The home setting can be a bit more difficult. There is but one care aide for everything. The aide can become tired or fatigued over time just as any of us can. Being an aide does not make them teflon proof to such mental/physical fatigue or burnout over time.

We don't always know what they are dealing with in their own home, how much sleep they are getting and if they are possibly burning out in their job overall.

No matter what the issues, there are certain standards of care that apply that should not be breached. Sometimes, if we have a person who is honest, dependable and provides good care, but we run into situations such as this and it's not egregious; the deficit can often be remediated unless the person is outright abusive and that of course is untenable.

Sometimes we can work with the person, let them know what is expected and how to communicate. We can do small things to lighten their being such as recognition, small unexpected token gifts or appreciation cards mailed to their home, or providing different items or arrangements in the care process.

We can ask them what their feelings are and how can we make the process more positive so our LOs reap the benefit of good, respectful and kind care. We can put our expectations in writing and how our LOs respond to communications spelling out the nuts and bolts in detail. No guesswork for the aide.

Do you think this person would have been someone you would like to have kept if her communications had been better with your LO? If so, do you think you could have worked with her re this issue?

It may not have been possible.

I ask this because finding an honest, dependable aide who gives good consciencious care is not always easy.

Sometimes, if egregious enough, and the aide is not motivated, there is nothing to be done but make a change. Our LOs depend upon us to protect them, they cannot do this themselves.

I was quite cautious in my interviews of aides and in checking credentials as well as letters of recommendation. I tried to obtain as good a fit as possible. Still, I ran into issues. (Understatement.) What presents itself in interview does not always translate day to day on the job.

In the earlier stages of my mother's disease process, I included her in all decision making dynamics. Her opinion did indeed count. This is fine. However, I had to learn the hard way, by coin of the realm, that this was not always the most appropriate method to having good outcomes. Took me awhile to get this.

Only you know what is best for you and your loved one and what the dynamics truly are. You are definitely a wonderful care coordinator who is trying to ensure that care is appropriate, of high quality AND kind and respectful as well.

We now have an aide for my step-father that to sound a bit trite, is heaven-sent. She is truly and angel and we are beyond blessed to have her. She has a written set of "policies" which spells out care functions out in detail including Dad's likes/dislikes and how to best communicate with him, especially when he gets testy. This has been helpful.

She's been with us several years now, and we verbally let her know how much we appreciate her. I drop her cards to her address now and then. We also give her gift certificates to restaurants at intervals so her days off will be enjoyed even further. At Christmas, I ask each sibling to pitch in for a monetary Christmas gift, (I don't call it a bonus), she has brought so much goodness into our Dad's life and by that alone, has also brought it to us.

I check in with her to see how her situation is going and if there are any unmet needs. If she calls with a need or issue, I address it immediately. I sincerely hope she stays with us until Dad is gone. The quality of his life has improved tremendously under her care. There are not many out there like her.

I wish you the very best, and hope that your care aide experiences evolve with an excellent outcome for all concerned.

Let us know how everything is going. We will be thinking of you.

Johanna C.

I'm completely in favor of monitoring. I live out of state, so a baby monitor wouldn't work for me (unless it was web-based). But the other day, a substitute attendant left the phone off the hook after I'd talked with my father (late stage 6) and I got to hear 20 minutes of her interactions with him while she barked orders at him about changing his diapers and he got increasingly angry and upset. During the call, I fired off three e-mails to my care manager describing what I was hearing and asking her to remove the attendant from the case. The care manager contacted the agency and the attendant was removed and disciplined.

The issue was (is) that my father is easily upset and never responds well to abrupt or forecful direction. Humor and distraction work, as, sometimes, does walking away and coming back to it later. The attendants sent out by the agency generally aren't well trained in dementia and often cause problems when they feel compelled to power through a task list. My complaint to the agency was that the attendant in question wasn't the right match for my father's personality.

I always try to get my father's reactions to caregivers. This is increasingly hard since he's losing the ability to speak. But the emotional reaction, when I can gauge it, gives me clues about which attendants are better and worse matches. And since some are successful and other's aren't, that's still a valuable exercise.

Hope this is helpful.


Best,
Alan

Cathy
I think that your use of a monitor was great. I also think it's great that you're involving your partner in choosing a new caregiver. Personally, I think that in almost all stages of AD, some caregivers are better liked than others for whatever reason and good for you for taking your partner's concerns into consideration!!!!!!!!!!!!!!!!!
Your partner is really lucky to have you taking care of her.

Adam, your getting to hear long distance was wonderful! It's also encouraging that you can still tell your father's reactions to different caregivers.

Re the wear and tear on even the best caregivers -- so far, it seems to work best to have one caregiver for the morning and another for afternoon. (In between, I fix lunch and have time with my partner.) That way, neither caregiver gets too tired even if it's a rough day. The afternoon caregiver (three hours) is doing fine. We're trying a new morning caregiver tomorrow, one we liked enormously during interviews but just couldn't schedule till now. Also, I'm hoping that I can have more mornings with my partner, just the two of us.

I know things may change, and suddenly too. That's part of the challenge.

So we'll see how it goes.

Cathy, you are amazing. You are like a human dynamo and I'm beginning to think that you can leap tall buildings in a single bound!

Here's hoping all your good planning brings terrific results. All fingers are crossed, but boy, it sure makes it difficult to type!

Keep us posted and don't forget to take good care of yourself. (If all else fails, there's always chocolate.)

Johanna C.