“The Pain of Caregiving” (essay in STAT)

This essay by Judith Graham is about seeing loved ones in pain.  Here are a few excerpts:

“What does a caregiver do in these circumstances, when someone you care for is in extremis?  If you’re scared as hell — a natural response — you go quiet, maybe leave the room. If you stay, you try not to minimize their agony. It’s their right to have it acknowledged.  So, maybe you say, ‘I’m here. I’m with you. I’m staying with you. I’m not going away.’  Or maybe just ‘there, there,’ as you would to a child. Or, ‘Hang on. We’re going to get you help’ — if you think help is available.”

“[My] sister in the early stages of frontotemporal dementia…called me often, asking, ‘Why is this happening to me? Why?’  I didn’t have an answer. I didn’t know what to say.  Why does devastating illness strike some and not others? Is there an adequate response to this existential cry of anguish from someone you love?  To me, this was worse than the physical pain I witnessed earlier in life.”

“For me, a sense of profound isolation eased when I came upon an essay by author Ken Wilber, ‘On Being A Support Person.’ In it, Wilber describes grappling with powerful negative feelings as he cared for his wife, Treya, who had cancer.  Anger. Irritation. Frustration. A desire to run away. An impulse to lash out. The torment of helplessness.  It took Wilber years to understand that his responses were a distraction — a way of avoiding Treya’s fear and sadness as well as his own. … Eventually, he realized the only way forward was to accept the vulnerability, the anguish, and the dread. ‘Your job is to hold the loved one, be with her/him, and simply absorb as many of those emotions as you can.'”

Here’s a link to the full essay:


I didn’t want to witness the anguish of loved ones in unbearable pain. But how could I not?
By Judith Graham
May 12, 2017

“Drawing Personal Boundaries in Caregiving”

Here’s another blog post from Donna Thomson of The Caregivers’ Living Room (donnathomson.com) about drawing personal boundaries as a caregiver.




Drawing Personal Boundaries in Caregiving
Friday, 10 March 2017
The Caregivers’ Living Room – A Blog by Donna Thomson

There’s a ton of messaging out there for caregivers that sounds like this:
* Make time for yourself!
* Plan respite!
* When it’s all too much, just say no!

Doesn’t it all sound so easy? And if we feel exhausted and happen to mention that to friends or family, those messages echo around in the conversation berating us for not managing our own wellbeing more efficiently.

The fact is, walking away from a child with autism who is in meltdown is not a responsible option. Respite may not be affordable or it may be more bother than it’s worth to arrange. Just say no to someone who needs help to feed himself? Not going to happen.

So how can we draw boundaries around what we do for our loved ones so that we maintain a sense of self, we protect our health and we find joy in our day even as we face challenges?

Here are some of my ideas – I would love to hear yours, too.

1)  Care for yourself as you care for others. If you make your loved one a cup of tea, make one for yourself. If the sun is shining, go to the window and look outside. GO outside with your loved one whenever you can. Nature heals. Put on music and dance together.  Look through old photos. These practices require discipline and the determined decision to find joy individually AND together at home. Placing yourself in the shadow of the person you care for can become a habit. “I’ll do something for myself at the end of the day when this is all over” is a terrible mantra, because it doesn’t work.

2)  Yes, I can help you, but a little later. Not right now. Parents of young children know this trick. Not every need or desire of our loved one requires immediate action or attention. Some things can wait. Exercising this prerogative to WAIT when it’s sensible to do so give us real options to do something else in meantime. It’s easy to allow our stress levels to rise at every request for help. Each call feels like an emergency. It’s not, it just feels that way. When a loved one calls for help with something, try answering “Just a minute”. Take a second to reflect on whether this is an action that you must take immediately or whether it can be postponed or not done at all. There are times when our loved ones can get in the habit of having help with everything even when they retain capabilities to perform tasks independently.

3)  Declare to your loved one that sometimes you’re both going to do something of YOUR choosing.  Very often in caregiving, we sacrifice our right to choice because we see our own needs as less important than those of our loved one. If your loved one wants to go shopping and you prefer visits to museums, declare that once a week, you get to choose the outing destination. The same principle applies to exercising choice over TV shows and music. Having care needs doesn’t equate to the right to choose how we live our lives outside of caring.

I would love to know strategies that you’ve tried in drawing personal boundaries in caregiving!

“Top 3 Excuses From Siblings Who Don’t Help With Caregiving”

This post will be of most interest to adult children.

The author of this blog post on AgingCare.com shares three common excuses from siblings who don’t help with caregiving:
* I don’t have the time.
* I don’t have the money.
* I can’t bear to see mom/dad like that.

The author suggests making a formal care plan and sharing it (with updates) with all siblings either by phone, email or snail mail.  Along with each update make a direct request for help.  These requests may result in ways in which siblings will widen their perception of how they could be useful or increase their guilt so they do something–anything–more.

Brain Support Network volunteer Denise Dagan read over the article and shares these notes:  If direct requests don’t work either, you have to decide when to let the struggle, and anger around it, go.  Because, really, the only person you can change is yourself.  The author shares how one woman wrote a loving letter of condolences to her siblings about how much they are missing and the peace she will feel at their parents passing having helped them through these difficult years.  She reached out to community resources for help and managed entirely without her siblings…and without anger over their not helping.

Here’s a link to the article:


Top 3 Excuses From Siblings Who Don’t Help With Caregiving
By Carol Bradley Bursack

‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion

What a wonderful title for a newspaper article!

This article is about the hallucinations and delusions occurring in the context of dementia. The article specifically mentions Lewy body dementia but note that hallucinations and delusions can occur in moderate to severe Alzheimer’s Disease. (As you may know, the ONLY way at present to confirm a diagnosis is through brain donation. Let Brain Support Network help you make those advance arrangements for your loved one.)

In the article, a nurse gives four tips for managing problems:

* Maintaining social contact
* Good sleep hygiene
* Music to soothe agitation
* Providing choice

Here’s a link to the article:


‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion
by Stacey Burling, Staff Writer
Updated: July 6, 2017 — 11:02 am EDT
The Philadelphia Inquirer



Prepare one-pager of medical info to ease an ER visit

There’s a website called “The Caregivers’ Living Room – A Blog by Donna Thomson” (donnathomson.com) that I recently came across.  Donna cares for both her son (with a disability) and mother (perhaps with dementia).

Here’s a helpful blog post from June about preparing a one-pager of information to ease an ER visit.  (I’m not sure everything for many of our group members will fit on a single page, but the suggestion is still worthwhile.)



Ease the ER Experience: Awesome Tip From a Reader!
Saturday, 24 June 2017
The Caregivers’ Living Room – A Blog by Donna Thomson

Facebook is a fantastic information sharing tool for natural caregivers. The Caregivers’ Living Room has a page…and lately we’ve been chatting about giving doctors and nurses an accurate picture of our loved ones in hospital. When our loved ones are elderly or have disabilities in the emergency room, it’s easy for medical professionals to make negative assumptions about how they are on a good day. …

Caregiver Kim had a great suggestion. She proposes a one-pager with up to date information that medical staff need to get an accurate snapshot of the person. Kim’s template has all the information that doctors need to know plus everything we WANT them to know. Thank you, Kim!

It seems like a lot, but once you get it done, it’s SUCH a good thing to have it on hand; and updating it only takes a minute.

1) First, I give the full legal name, followed by what he goes by (i.e. James Reginald Smith, goes by Jim)

2) Next, Date of Birth

3) Health Card Number and/or Insurance Details (even though the health card should be with the patient, it’s convenient to note it here)

4) List of Diagnoses (include allergies to medications, and any anaphylactic allergies). It may also be helpful to note the date of each diagnosis.

5) List of current medications; how long you’ve been taking them, what the dosage is and what the medication is for (as some meds are used off-label). This is where it’s important to update the page annually, and/ or with every change that occurs. (Also, the ER staff will ask which medications have been given that day – be prepared to answer that question.)

6) Previous surgeries (include year and place); serious illnesses/previous hospitalizations (include year and place)

7) For children, indicate if vaccinations are up to date. For adults, note when last booster shots were given (i.e. tetanus).

8) Behaviour/personality traits. This is where I’ve listed that my son is normally extremely active and very happy and content. This helps the doctor see how far from “normal” the patient is. (Note from Donna: I include a photo of my son and my Mom on their one-pagers so professionals in the ER can see their vibrant, smiling faces when they are healthy)

9) If they have problems communicating, or a different way of communicating, note that here.

10) How do they normally deal with pain? (i.e. do they have a high tolerance for pain?)

11) You might want to include any other information that would give an indication of what “normal” activity and competency levels are (such as work or hobbies). But remember this is a BRIEF summary of the patient, so be succinct. Only include pertinent information and in a concise manner.

12) List of doctors, indicating what field (i.e. family doctor, oncologist, etc) with their contact information. Also, list additional medical contacts, such as the pharmacy you normally go to for prescriptions, or doctors that might not be considered primary care (perhaps an allergist, or a dentist).

13) List a couple of people who are emergency contacts. Note the relationship to the patient and be sure to give phone numbers where they can be reached at any hour.

14) Finally, at the bottom of the page, note the date that you last updated this information. If you have not updated it in a while but it is still correct, just change the date (so that people can see the information is recent and still relevant). Every time you update the page, re-read the whole thing to be sure all the information is still correct and has not changed.

15) Note from Donna: I would also add whether there is a Do Not Resuscitate Order on file. Also, if you have a Power of Attorney or Guardianship arrangement for your loved one, this should be noted on the page as well.