I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It is an explanation of research into caregiver burnout and an opportunity to participate in a survey about caregiver burnout.
I'll take a look at it. Of course the unknown, and possibly lengthy, road ahead of us is a MAJOR factor in our stress. Imagine you were a long-distant runner, running in a typical 3 mile XC meet. Before the race, you've walked the course so you know where you're going. (My girls were XC runners in H.S. so this is a familiar analogy for me.) Well, I can tell you that those kids push themselves to the breaking point in these runs. But they can, because they know where they are. They know, for example, that they've just rounded the corner and crossed the stream, and that's halfway. The horse pasture--they're almost 3/4 done.
Likewise, if we knew where we were in the "Caregiver Open," most of us could keep on going. (Maybe in a 26.2, not so much, but 3 miles for sure!) Of course there's also the fact that there's no glory at the end...only death. Ouch.
It seems self-evident to me that we're more apt to drop from exhaustion, knowing the very real possibility that there's no finish line in the foreseeable future.
And, sorry Emily since this is fresh for you, the stress doesn't go away when a loved one is placed. We're still the advocate and have to keep on our toes to see that good care is given. The stress is different, though, to be sure. I think your analogy is spot on. If we know how long, how far, how intense, etc. we can adjust to "markers."
And, in substitute teaching in special needs classes, I've been struck by the similarities between parenting these young people and caring for our spouses. Having been scratched and warded off biting attempts, pottying, entertaining, some of the behaviors are very similar. Depending on level of disability, parents are stressed, too, and don't know how or where their finish line is, either.
Filled it out..lengthy. Interesting questions. Hope results of the survey are posted sometime. I would have like a little more chance to put some details as some of the questions were more "maybe " answers than just a yes or no...but it is a start anyway.
I also had fun filling it out...Now they will wonder if I have dementia, or is their survey asking the wrong questions.....I think my answers will surprise them.... I even donated half my brain...it is said that we use less than 50% of it anyway...and I use even less....
I completed it and like others, I wish there were a place to add details or clarification. Some answers won't make sense if it isn't clear whether the person w/dementia is placed or at home, whether he's verbal or not (as mentioned), etc.
Dr. O'Dwyer is very interested in your comments, and would like to respond. I have given her permission to sign onto the boards for the purpose of commenting and answering any questions you may have.
Since she is in Australia, and I have no idea of the time difference, except that it is considerable, she may not log on until tomorrow (our tomorrow), but please look for her posts under this topic.
I must first begin with a huge thank-you to Joan for helping promote this research. I have been amazed and humbled by her generosity.
Secondly, an equally big thank-you to those of you who have already completed the survey. I am so grateful for your willingness to share your experiences. Your responses will be combined with those from carers around the world and will be used to inform the development of better programs and policies to support families and spouses caring for a loved one with dementia.
I noticed that several of you would have liked a section to add further detail or comments. If you would like to share more about your experience or clarify your responses, please feel free to contact me directly via email at s.odwyer@griffith.edu.au I would love to hear more about the experiences you have had and how you've coped with them.
Thank-you too for persisting despite the length! :) We were reluctant to ask people to complete such a long survey - particularly when you already have so much on your plates - but we wanted to ensure that we would get a really comprehensive picture of the caring experience. If I could have found a way to give you a cup of tea and a piece of cake half-way through, I would have - unfortunately I'm just not that tech-savvy :) Instead, I hope that the 'resume later' option removed some of the burden associated with the length.
I have also notified our tech people of the 'timing out' issue and I am hoping to get this rectified soon. My sincere apologies if this happened to you and thank-you for your patience.
We will definitely provide Joan with a summary of the findings once the research is complete. Having been a carer myself, I am keen to ensure that any research I conduct has meaningful outcomes and that the findings are shared with the people who can do the most with them.
I think I've addressed all the questions and comments. If you have any further questions or comments, or if I've missed anything, please feel free to post another comment here and I will try to respond to any future comments individually.
It's now just after 5pm on Saturday 24th March in Australia. I'm based in Brisbane, which is about 2.5 hours north of Sydney by plane. It's been about 30 degrees C today (I think that's about 86 F) and we've just had our State Government election. I'm off now to have dinner with friends and watch the results.
Thank-you again for your interest and participation. My team and I are really most grateful. Take care, Siobhan
Have the floods been a problem this year in Brisbane? I'm in the process of filling in the survey but as a widow, so in some cases, my answers reflect my current situation. A problem I have is that sometimes, I have to scroll up to see what is the response required, then scroll down to find my place again, and across, and I'm sure that errors result after 20 minutes of doing this. I know that little captions sometimes appear to refresh the response requested, but not always. I don't know what the solution is. I know that at the University they gave us surveys like this and after many complaints, they solved the problem by making the window smaller (in one case, it was by making the headline in smaller font). Now it gets that if they send out a survey where I have to scroll across and up and down, I don't do the survey: it's too time-consuming, and there are so many. I'm doing yours in 3 stages and have to confess I was ready to quit in the first stage because of this problem, but am only continuing for Joan's sake.
I think that this survey may give the survey group a good cross reference to a large group of caregivers and how the dementia affected them. Maybe someone will be able to provide new caregivers better information than we received during our journey with this D** disease. If it had not been for this website and all the support that I received here and the experience that others shared about their journey a lot of us would have probably threw in the towel and just gave up. I thank you all for your support and information shared during my trip. Now that part of my life is done I can only pray that I can return the favor and continue to bless you as your journey continues. God bless you for all you provide to others. Bruce D *
I did complete the survey and I used every opportunity they gave to add additional information :)
My only comment would be that my answers now are completely different from what they would have been while I was still caring for my husband at home. I think it would have been helpful to add a spot to the "placement survey" that asked questions about how you felt when your LO was still home.
Mary75 - Thanks for completing the survey and thanks for your concern. Fortunately we haven't had any flooding in Brisbane this year. After last year's disaster I'm not sure the city would have coped with another one. There has been flooding in other parts of Queensland and New South Wales again this year though and it has been devastating for people living in those communities. Thanks for your feedback on the survey too - the scrolling is always an issue with online surveys - particularly when people have different sized screens. Ideally we would have put the response option headings (e.g. Never, Rarely, Sometimes, Often etc) at regular intervals down the page, but the software that runs the survey only allows this after a set number of questions, so our hands were tied. I will relay your comments to the software designers though and hopefully they might be able to make some modifications for future surveys. Thank-you for your patience and for continuing to persist with it - I know how frustrating these things can be. Your responses are so important to us and I really appreciate your patience and generosity.
Bruce D - Thanks for your support. We do hope that this research will lead to better outcomes for caregivers and that as future generations encounter this dreadful disease, they will be armed with more knowledge, skills and support than carers have now. So many people struggle to do it alone, with little information and no support, and it's no wonder they burn out. I'm so glad that you felt supported during your journey and I'm sure that opportunities will arise for you to return the favour.
Nikki - Thanks for completing the survey. I'm glad you found places to provide additional information :) We have divided the research into three surveys - one for people caring at home, another for people whose loved one has moved into care, and a third for carers who have been recently bereaved. We hoped that this would give us a sense of how the caring experience changes across these different stages. Although it doesn't allow us to look at how individuals have felt across these different periods, we hope that with a large enough sample (we are aiming to have 1,500 people complete the survey - 500 from each stage) we will get a good sense of the similarities and differences between carers in those different phases and how those transitions influence carers' physical and mental health. If you would like to share your feelings about your personal transition from caring at home to placing your husband into care, I'd love to hear your story! Please contact me directly on s.odwyer@griffith.edu.au
Thanks again everyone. I appreciate you taking the time to complete the survey and post comments here. Your feedback is really helpful and will help us to interpret the results of the current survey and ensure that any technical glitches or design flaws are addressed in future surveys.
Enjoy the rest of your weekend - it's now Sunday morning here, which for me means doing laundry and some cooking for the week ahead. Not exciting, but strangely therapeutic after a long week :) Take care, Siobhan
A good friend at work has a husband who has been surviving pancreatic cancer the last year thru regular chemo, lots of medical support and spouse home nursing care.
Because we got nothing better to do and because we both recognize that we are 'widows in waiting' we have debated who has a tougher time. I won the debate when I was able to produce studies like this.
She could not find any studies about stresses of cancer caregiving spouses. ;-) I think it is because of the predictable time line for cancer compared to AD. (as noted)
M-mman - There is evidence to suggest that caring for a person with dementia is significantly more challenging than caring for someone with a physical illness or disability, because of the additional cognitive problems. While this type of evidence is helpful when applying for funding for dementia-specific studies, I always feel uncomfortable citing it because I feel like I'm taking something away from people who do an amazing job caring for people with other illnesses or disabilities. I know I've read some literature on cancer carers, but I suspect the reason your friend couldn't find any is because cancers carers are probably included in the more generic caring literature, rather than singled out as a unique group. I agree that the predictable timeline is definitely a factor. I think there's also much to be said for the social perception of cancer and how that influences the support that the caregiving spouse receives - friends understand that cancer is a tragedy, they bring food, they visit the hospital, they take turns going to chemo etc - friends don't often understand the diagnosis of dementia, the symptoms scare them, they don't know how to help, and then tend to drift away. I think researchers, advocacy organisations, and governments have a long way to go in educating the general public about the realities of dementia.
Terry54 - Thanks so much, that's great! I hope it didn't take too long and that it was an opportunity to reflect on your experiences. We've had nearly 100 responses so far in the first week or so and are looking forward to many more over the coming weeks and months. Every response adds something unique and I can't wait to take a look at all the data. Thanks again - I really appreciate you taking the time to work through it!
Siobhan, the survey was easy and the questions insightful on reconizing what I may or may not feel. I did walk away asking myself "why am I not drinking or taking drugs?" :) Thanks for doing this program and hopefully you will gleem lots of useful information.
Siobhan. I completed the survey several days ago however thanks to a slip of the iPad it was submitted lacking the follow up contact info. My email is on this site if you want help iding my survey Really would like to see how analyize the impact of National Heath Care afforded to all the citizens in your survey except those of us in the USA.
Ps Spent a week on a dive live aboard out of Cairns -fantastic experience with Mike Ball, then toured for a month. Aussi's the most friendly hosts bar none !
Terry54 - thanks for helping me start my day with a laugh! I often walk away from encounters with carers thinking exactly the same thing - why aren't they drinking heavily or knocking back the Valium??? I'm continually amazed by people's resilience, particularly when I know the same situation would have me curled up in a ball, sucking my thumb, and rocking slowly forwards and backwards! In all seriousness though, I'm so glad to hear that the survey provided an opportunity for you to reflect on your experiences and your feelings. Thanks so much for doing it - each response adds something unique and when we put them all together it's definitely going to be eye-opening!
Vicki - thanks so much for completing the survey. I'm glad to hear you thought we were on the right track with the questions. It's always a challenge to know which ones to ask and which ones to leave out, and we had many long discussions!(Fortunately they were over coffee and croissants, so it wasn't all bad!) Thanks again for sharing your experiences - I really appreciate it and can't wait to get the results back to you guys, either later this year or early next year.
Nelsons - thanks for completing the survey. Those iPads sure can be slippery little suckers! If you want to email me directly - s.odwyer@griffith.edu.au - with your details, I can add your follow-up contact information to our database. Thanks for being willing to participate in a follow-up - that is really generous of you! National health care in Australia isn't what it used to be, unfortunately, but I think we are definitely still ahead of the States on this one. It will certainly be interesting to see the differences. We have also been inviting carers from the UK to participate and I suspect their experiences with the system will be different again. Glad you enjoyed your time in Australia - it really is a spectacular country and you could spend a lifetime exploring. Griffith University, where I work, is set in the middle of a State Forest and it's so beautiful to come to work everyday and see all the beautiful trees, and the goannas and the birds. And just yesterday as I was heading home, a koala crossed my path!