Dementia: ‘You’re Doing A Great Job’

I get a little tired of people telling me ‘I’m doing a great job’ as a Maureen’s Care Partner. The following post from the Alzheimers’ Reading Room points out that words are cheap:

‘It is not unusual for caregivers to tell me that as time goes on, and as Alzheimer’s worsens, one by one their family and friends fade away.

One issue that really frustrates me is the treatment of Alzheimer’s caregivers.

Most Alzheimer’s caregivers hear people tell them how wonderful they are for taking care of their loved one.

As a caregiver, I learned to appreciate these compliments. They help, they really do.

However, if you have a loved one, family member, or friend that is an Alzheimer’s caregiver and all you do is tell them what a great job they are doing — it is not enough.

Many Alzheimer’s caregivers are forgotten by family and friends.

This is a sad truth that is rarely discussed.

This is understandable — Alzheimer’s is scary and disconcerting. It is hard to accept, hard to understand, and hard to watch as it progresses.

It is not unusual for the friends and family to continue to call and give the caregiver the old “rah rah sis boom bah”,and then they get back to their own life.

The caregiver puts their life on hold — or worse they have no life — while caring for a person living with Alzheimer’s. Calling and letting the caregiver “vent” is helpful, very helpful, but it is not enough.

Like it or not, if you are a family member or friend of an Alzheimer’s caregiver and you are not helping them — you have abandoned them. I am sure this sounds harsh. But, it’s not even close to the harshness of your own behavior.
Caregivers need help. A few hours here and there to get away from it all is an important step in improving their lives. Some time to enjoy the world outside their home: time to re-attach with others.

Why am I so passionate and adamant about this?

Forty percent of Alzheimer’s caregivers end up suffering from depression — four out of ten. Do you want to see this happen to a loved one or friend?
Alzheimer’s is a sinister disease–it kills the brain of the person suffering from Alzheimer’s.

And, it will try to kill the brain of the Alzheimer’s caregiver.

I really don’t believe this problem is well understood.

Here are my immediate suggestions.

  • If you know an Alzheimer’s caregiver, find a way to organize the troops– family and friends — and get involved. Somebody has to take the initiative and if you are reading this article — take charge now.
  • If you know a family that is dealing with Alzheimer’s send them the link to this article and encourage them to organize up their own troops and do something.
  • Nothing works better than a small team of caregiverhelpers. The key words here are team and team work.

Here are some actions that will improve the life of the caregiver and help them avoid depression.

  • The Alzheimer’s caregiver needs to get away from it all. They need a respiteevery few days. This means someone must take over while they go do something they enjoy. You might find this difficult to believe, but when I get to go to the store, take my time, and look around at the surroundings — it is a treat. I bet you take this for granted.
  • Invite your Alzheimer’s caregiver and their loved one over for lunch or dinner. Most Alzheimer’s caregivers tell me that one of the biggest problems they face is socialization. If you don’t believe me — ask them. Both the caregiver and patient need to talk and interact with other human beings. Don’t you?
    Socializing really benefits the Alzheimer’s sufferer (see:A Wonderful Moment). What is not as apparent is how much it benefits theAlzheimer’s caregiver.
  • This one is tough to do but could very well keep the caregiver from becoming depressed. Many sufferers of Alzheimer’s get up in the middle of the night. This means the caregiver needs to get up with them. Sleep deprivation often leads to depression and it can cause erratic behavior. Imagine going night after night without sleeping well. If this is happening to someone you know, you need to help design a plan that allows them to get the sleep they need.
  • Do you know an Alzheimer’s caregiver? Ask them when was the last time they went to a movie? You might be surprised when you hear the answer (that is went to a movie thereafter, not watched a movie on television).You can solve this problem through team work: one person looks after the patient, and the other one takes the caregiver to the movie.This is a “get away from it all experience” that is really beneficial to the mental health of the Alzheimer’s caregiver’.

Bob’s suggestions are particularly relevant here as contact has dried up from some quarters and this is a great disappointment to Maureen.  It must be dreadful to hear that your own family are too busy to see you at a time when you need to see them more than ever.  It is also disappointing that their support to me as her Care Partner is equally lacking.  I have made noises but my pleas are leading to excuses rather than genuine reasons for inexplicable behaviour by Maureen’s nearest and dearest.

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About Remember Me

I am a retired adult educator. My wife had a stroke in February 2014 and now has mixed dementia. Her recovery from stroke has been exceptional apart from 50% loss of peripheral vision and vascular damage. 'Dharma For Dementia' is my approach to being Maureem's Care Partner: it aims to end the suffering of 'Prescribed Disengagement' (Swaffer) .
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4 Responses to Dementia: ‘You’re Doing A Great Job’

  1. jmoyle2015 says:

    Amen and amen Paul!!..great article. I was actually just saying to my wife, who has alz, the other day what is needed is for people to initiate support and not wait for us to call them. Fortunately my wife is till in early stages, but I/we still need support. Its the emotional tank that is always running on empty.

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  2. I’m so sorry to see how exhausted and unsupported you feel.

    Like you, I am violently opposed to using drugs like Seroquel or Resperidone on dementia patients, but there must be some sedative powerful enough to enable Maureen to sleep through a whole night sometimes, no?. If a friend or neighbor came in to take over listening to the baby monitor, then at least you could sleep more soundly, confident in the knowledge that the third person could awaken you if necessary.

    You probably already know about lotshelpinghands, but if not, this is a web-based tool for building support teams for folks like you and then a calendar scheduling things you need help with.


    http://lotsahelpinghands.org/webinars

    If you find lotsahelpinghands promising, be sure to get someone else in addition to yourself as a coordinator so they can help you dig deeper into Maureen’s past, your past, and your children’s and friends past to find others to volunteer to help. The book _Share the Care_ states that there are always people willing to do something if the task is specific or calls on an interest or skills of theirs. For example, you might be surprised to find some of your earlier students who would love to go with you somewhere for a brief respite break or bring a dinner some night. People can be very inventive sometimes if they get the chance to come up with their own ideas.

    I’ve read how Maureen can get into hostess mode or carer mode for people she cares about. Then I’ve read how she can berate you continually at times. The fact that at times she can be very kind and supportive suggests to me that she is capable of controlling her behavior — at least some of the time. You do not deserve to be verbally abused. A friend of mine with a husband with Alzheimer’s took a lot of criticism from her spouse until she finally said, “Bob, it is not fair for you to take out all your frustrations on me, If I cannot do things right, I’d be happy to help you find someone else to stay with you, and I can live in peace elsewhere. If you keep being so mean to me, I may want to do that.” Of course, Bob was fearful of the thought of her leaving, so he made much more of an effort to be kinder to her. And he expressed more gratitude. Of course, at times he forgot, and things were not all rosy, but she got out from under the constant brow-beating. I would wish that for you as well. You might ask the Admiral Nurse what she thinks of setting some limits on her criticisms of you. I don’t know Maureen, and I am only a person with dementia myself. But I hope my family insists that I treat them as well as I possibly can for as long as I can. People’s sympathy for my condition doesn’t mean I cannot be held to common standards of courtesy!

    I live alone now, and I only wish I had someone as wonderful as you.

    (((HUGS)))

    Carole in the U.S.

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