Today, as part of our blog series for Dementia Awareness Month, Tina Baker who is the care partner and wife of one of our members Dennis Frost shares with us what is is like, for her, living with Dennis, as well as living and supporting with Dennis, who is diagnosed with dementia.
Tina highlights the importance of not defining the person by the dementia or the disabilities casused by many symptoms of dementia, as well as some of her own challenges and highlights. Dennis also shared some of his musings with us recently.
Thank you Tina.
Living with Dennis and Dementia
By Tina Baker
Dennis is for the most part pretty easy to deal with as he keeps himself busy, with projects, zoom meetings, which are on most days. He does side projects for each of these and when he is not doing these things he is out in his shed making fine detail for his model railway, or making items from wood, which he is very good at and has made several items of furniture around the house over the years
Time watching, Dennis will eat at the same time every day, and wants to go to bed very early, and he wants me to go with him, he says he can’t sleep unless I do, unless I am away from home, but as I work shift work and some shifts I don’t finish until 8.00 pm and get home, shower it would be about 8.20 so when he says are you ready to go to bed at 8.30, of course I am not, no I say, 8.40 are you ready now? Ah still no, I have now taken on a bad habit of downing 2 glasses of red wine as fast as I can so when by the third time at 8.45 I am at least relaxed enough to go to bed, and hope that sleep will happen, especially if I am on a 6.00 am start. I wish I didn’t indulge him years ago with this then maybe it would not be an ingrained habit now.
One thing about Dennis is that his taste for food has changed and he really doesn’t like many foods he once liked, this has created a somewhat issue with what to cook, so now most dinners are now plain, although sometimes I just want to have something I want so I cook 2 different meals, but because I work shift work, I am able to cook the foods I want to eat, which works out well in this regard. I do cook up meals that I know he likes and freeze them of in hope when I am on a late shift, that at least Dennis might eat well enough.
Dennis is very independent and so is able to look after himself in a capable way, he gets his own meals ready when I am working, he still bakes slices and muffins ect, he still drives … although since Covid this year that is limited, he can still converse on the phone.
Dementia and the after effects, this can be embarrassing at times …. It also can be a good thing. On the bad times occasions the few times that Dennis has lost his temper in a supermarket, throwing things, arguing with staff about, well anything, being threaten with the band forever… been better for a while on this”, on the good side, he has managed to get our phone bills reduced, he has argued with billers to give us a better deal, rate, he has saved us hundreds of dollars over the year/s ….
But I am his voice in the bad times; I explain why he is like this why change may make him angry … why he is not wearing a mask…. Covid has bought its on challenges …. But he Dennis has adapted to these, as long as the people don’t come on the attack…. Eg…. Do you have a mask sir … Dennis no …. Here is one you can wear…. No I have an exemption …. No problem sir …. Instead of NO MASK NO ENTRY this will only bring on a Dennis Tantrum in my words .
What do I do for me?
Well, as it has been stated above I am still full timed employed, so my time is mostly taken up with work, but I love to walk and I am luckier than most carers as I am able to do this … my down time from work and the daily grind, is to walk for km … around work shifts which take me to different locations … bush, the beautiful south coast, local and even the hills of Kiama. I am also still able to go away overnight occasionally with friends to attend shows and events. I would never take this for granted, especially after reading about so many other carers, I just appreciate the time now, and hope to be prepared when the time comes for other situations
Dennis has a great support team whether it is from his group of people with the disease around the world, his friends that he has locally or the extended people throughout the studies and groups he is involved in , as for me? If there is anytime I just need to vent then the Dementia cares group is a great way to do this, through this site I have learnt so much, especially on how to answer the questions that others will ask about Dementia. As I am a health worker at a hospital, and where that hospital does have a ward just for people with Dementia, I am able to answer questions on behaviour, on how to deal and treat these people but using the experiences that I have had, I am able to tell people that Dementia is real but is nothing to fear, I am Dennis voice in many situations, but I am also the one that explains what I do know to the next generation. I have been given cards and advice over the years on where to find support if I ever do need it and as I do work in the hospital environment I think I can find a way to get support if needed, there are resources out there, and it’s just a way to find out how to access them.
Dennis has come so far with his knowledge and training in the Dementia world, he has been in many studies, involved in many ways different groups, I think his input will go on to teach many others, and I am just glad that I can be a small part in this, maybe someday there will be a cure, and everyone that is involved especially the input of the ones with Dementia that have spoken out about their experiences will be the thing that has helped with this cure, they are should be proud of the part they have had with their voices and stories have helped so many and will help so many more because they were brave enough to speak out. I may not like everything about this nasty disease but I do love knowing that the person I love so much may the voice that can change the world and its opinions about it …… and I have experienced so much, because of it, I would never have thought about traveling to some of the locations I have been lucky enough to experience, I would not be as brave as I am now to speak up, to use my voice to help others understand, I would not be the person today if I did not meet Dennis, Dementia or not he has taught me so much .
Dementia is a disease but is it does not define us, those that have it and those that are close to it, but all stories connected can change the conception of it and eventually lead to a the Cure.