Author Archives: delores663

A friend sent me this and I just can’t resist — I am hoping we in our situation will find it even funnier….

Well I’ve been spending a lot of time with Dr. Google lately, digging into the drug trials and drug assessments. Seems like the most thorough ones are the ones where government bodies in countries with public health are trying to figure out if the enormous cost of these drugs is worth the money in terms of patient and carer quality of life. (I’m paraphrasing an awful lot of statistics and probabilities and assorted test scales here, most of which I don’t understand very well.)

However, the bottom line (and they mean it!) seems to be that the drugs like donepezil (Aricept) work in terms of improving life for patient and caregiver, at least until the severe stage, but that the deterioration continues underneath the drug treatment of symptoms, so that stopping the drug leads to almost immediate huge setbacks.

Memantine (Trade name Ebixa here in Canada) works to improve mood and maybe function a little tiny bit, (in several studies not even statistically significant) and is considered cost effective. However, the delay to care home placement is measured in weeks or a couple of months. And here I thought we were talking years of stabilization! No miracles here, folks (move along).

Nonetheless these incredibly expensive — and profitable — drugs are cost effective for government systems because even a few months of delay in placement saves thousands of dollars to the health care system.

I THINK, if I read it right, the assessment for the UK also indicated that although these drugs do help somewhat with functionality, they do not affect life expectancy — they slow down the deterioration but do not stop the progression of the disease, which is going on underneath the drug treatment. Most of the trials continue to be of such short term though – 6 months, 24 months – that there really isn’t a lot of info. Also the government assessment is most concerned with delay of placement in care homes, not long term outcome.

Very confusing and of great interest to those of us like me who wonder how long WE can survive our loved ones’ illness.

http://www.nice.org.uk/nicemedia/live/13419/53619/53619.pdf

db

This is a pretty amazing demonstration of the ability to communicate long after the words have gone….music and early memories remain to be used as a bridge. The video says to check out memorybridge.com for more information, and I sure will. I am pretty sure that such techniques modified to each person’s level of disability (not so extreme) will also work with our dear ones who are not so far lost in this path. I guess we will find out 🙂

https://www.upworthy.com/youll-be-amazed-how-just-a-song-could-break-through-to-this-woman-with-alzheimers?c=upw1

A day to be thankful for what we have, because it always could be so much worse, and because we have friends like our Tuesday group to help us along this long and lonely way.

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Here’s what that workshop said worked liked like magic (there was more but I had to go pay attention to the hurricane brewing in my living room…you know!)

On Criticism

Don’t deny, don’t defend, don’t counter attack, and don’t withdraw.

Maybe it’s a mantra for those in horrid spaces with their beloved.

Hard to do – requires being absolutely centred – not self-centred – just centred, – breathing from the diaphragm and knowing all is dust and ashes and joy and tears of laughter ….

I think this has something to do with it all (although I couldn’t say exactly precisely what!) … but all the wisdom ties together   https://careingcv.wordpress.com/2013/10/09/looking-forward-to-more-self-care/#comment-14

db

Does anyone know what the effects of memantine are — they tell me it will (or MIGHT) stabilize my love at his current level of ability (which is better than him getting worse naturally) but I am wondering how it affects the overall course of the disease. (as if we know what that is!) What I am wondering (and I suppose it is wicked) is whether this drug means he will be “stabilised” like this for another decade? Or if the typical disease profile still applies?

As this long journey goes on (and on and on and on) I find myself being forced to spend more time thinking about me and how I am doing. Not so well, some days, for sure. I can feel that I am developing the same “pain in the neck” that I had for two years before my mother died, and now I am facing a long drawn-out similar situation with my love. Yikes. I need to learn how to put the joy back in my days, because I could die with this situation still continuing. Can’t “wait it out” because it could be another decade or even two. Unreal. I have to learn to be joyous in the midst of this, and I need to stop thinking of it as a prison (although it is — one with no hope of parole!)

All this whinging started out as a simple note to my Tuesday group friends about the next tele workshop I hope to listen to: ” Strengthening Your Caregiver Backbone: Assertiveness Skills for Family Caregivers: In this session you will learn some simple yet effective communication tools that will benefit any interactions you have with others. Learn how to be more assertive with the person for whom you are caring, other family members and people in the healthcare system. Assertiveness involves actively expressing yourself, while also listening to and respecting the rights of others. Whenever there are differences, both minor and major, becoming assertive can help to minimize the ongoing confrontations that can rapidly develop due to the stress and demands of caregiving.  This webinar is facilitated by Allison Reeves, Registered Clinical Counsellor and runs from 6:30 – 8:00 PM. We gratefully acknowledge the United Way of Greater Victoria and the Province of British Columbia for partial funding of this event.”

You can register through http://www.careringvoice.com/for-caregivers.php

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Here’s a course at NIC that might be of use to some of us — I am planning to take it if I can get a caregiver for the day!

GENI-5750

                Activity Programming for Residents with Dementia

http://www.nic.bc.ca/continuingeducation/searchforcourses.aspx?type=ALL&campus=ALL&search=DEMENTIA

Just got an email from the Care-ring Voice Network about their fall webinars — or tele-workshops. The workshops are also listed here: http://www.careringvoice.com/tele-upcoming-sessions-home.php

These are free sessions that you phone in to, and sometimes you can ALSO watch on your computer (but the phone is the important part). They are usually in the evening or at noon, and only one or two hours. There are several sessions  this fall on elder abuse, but also lots on and for Caregivers too.

The BC Family Caregivers Network Society (http://www.careringvoice.com/tele-upcoming-sessions.php?id_organization=27)  has one on Assertiveness Training for Caregivers. Hope it tells me how to tell my guy NO without triggering a major episode.  Or maybe how to tell people they really have no idea what is going on in his head (or not) when he smiles and looks pleasant.

Many of the BC workshops are facilitated by Allison reeves, a therapist in Victoria who I find enormously helpful. Don’t know how she gets the emotional energy to be so empathetic and directed at the same time, but she has helped me many times over these many years.

Anyway, I hope people take advantage of these workshops — they are a wonderful resource, and one more way of sharing our burdens, our successful strategies, and our joys.

-DB

On Sunday we had a meeting of the people who have been doing some caregiving for my partner, under the “CSIL” programme — Community Support for Independent Living. This program gives you the money to hire your own caregivers independently. I don’t think they usually give it to dementia caregivers, because it was set up for physically disabled people who wanted to direct their own care. However, in our case, so far, it is working wonderfully, since I hire only people Don likes, and they can take him out in the car (which equals freedom from his constraints, in his mind) and take him to concerts, the museum, etc.

Anyway, we all got together for a quick meeting and debrief. We talked about the different experiences each caregiver has had — what he can do, what works — for example, care rides, and what doesn’t (too crowded a situation). We talked about the issue of bathrooms — when the caregiver needs to go, what do you do with your client, who is liable to get lost by way of panic? And vice versa. Answer – give him something to hold, and, for both of you, use the disabled washroom if there is one, because it only has one door, so it is easy to watch.

We laughed, and told a few stories, (including how to use the old Navy stories as a way to distract him) and all understood that the goal is to keep Don entertained and happy, so that he is “healthy” longer. And to give me some space so that I can rescue my own life.

I got some insight into what my partner is like when I am not there too.

In the end, one friend hugged me as they all left and said, “You have a team now.”

And yes, a team meeting to discuss changes and further developments seems like a very good idea every couple of months. That is another advantage of being on the CSIL program — the ability for the prime caregiver to share in that team evaluation aspect of care.