Several years ago Ray was diagnosed with Louie Body Dementia. Mary, his wife, has been his primary caregiver, along with daughter Alison. This interview conducted with both Mary and Alison aims to give some insight into their lives as caregivers and experiences they've encountered along the way.
Q1. What do you know about dementia? How is it caused? How is it diagnosed? Is there treatment, if so - how is it treated?
Mary: At the initial stages of diagnosis I felt ill-informed about dementia. I felt the need to gain a deeper knowledge quite swiftly, so I may be able to know what to expect from the disease. I did know about particular groups I could approach although I did not have the spare time to partake in these sessions as I needed to care for Ray.
Alison: I initially did not know much about dementia, especially Louie Body Dementia. I Acquired a deeper knowledge after diagnosis, through reading and general interest.
Q.2. What experiences have you had with dementia? Knowing someone that has been diagnosed, how has this affect their day to day life?
Mary: After also developing Parkinson along with Ray’s dementia he had now lost the ability to drive. His attention span had also deteriorated along with his memory and ability to socialize. Eventually, his balance deteriorated, which made it basically impossible for him to move unassisted. The memory lost also meant that he would forget that he could not walk, so I could never leave him. Some days he might be not at all well but other days he would manage nicely, there was consistent fluctuation.
Alison: Dementia has had quite a dramatic effect on Ray’s day to day life. Ray had lost the ability to drive soon after being diagnosed with dementia. He seemed to experience a degree of isolation as he lost the ability to socialize on a consistent level. He was so clever, creative, and artistic but gradually he also lost the ability to continue doing the things he loved. It has impacted every facet of his life, physically mentally, everything.
Q.3. What type of Impact has their condition had on your day to day life?
Mary: A very big impact. As his condition deteriorated I couldn’t leave him alone. Although he has always been very cooperative, I never have any time on my own, really I haven’t for quite a while.
Alison: It had a pretty big impact on my day to day life. In hindsight, it has probably had quite a big impact on family members health. The need to have people come into our home and help meant that there was an intrusion, although it was a big change it has been extremely helpful.
Q.4. When caring for a loved one with dementia there are countless barriers that need overcoming each day. What are some difficulties you have experienced?
Mary: He was not really given to wandering. Once he did grab his keys and wallet, leaving the house to go to our close friend's house calling their names, although this wasn’t too common. One the biggest problems was if he fell, there was nothing I could do, I would have to get neighbors to come and help. I would often think of calling my daughters as they are always willing to help, though it was often late at night and they usually had to work the next morning, so I didn’t want to disturb them. Even getting Ray into the car was quite a big undertaking, due to his physical limitations.
Alison: I think if the caregiver has health problems of their own, that can be a very big issue. Mum has quite big issues with her arms, which she can barely use and her back which provides countless problems. Older carers have their own set of difficulties that younger carers don’t, although this works both ways. Most of the time younger cares have children to look after and a job that takes up most of their time.
Q.5. Were these issues ever overcome/resolved - if so, how? What type of solutions could be implemented in order to improve them?
Mary: I was very fortunate that Ray got a level four package, very quickly. A level one is very basic care you don’t get much with that, maybe you can get showering once or twice a week. When we did get a level four we were provided with a lot. They would come in and do showering and dressing every day, they would even clean the windows if they needed to be done. Although all of this did cost us a thousand dollars a month. Other things like my daughter’s medical knowledge were extremely helpful in certain situations where I needed advice. I am very fortunate to have the support that I did. Carers support also gave very good support. I was able to go to meetings although I didn’t take advantage of it all as I was able to manage by just researching on the Internet.
Alison: I suppose it was quite helpful having the assistance from others coming over and the services dad was able to access were helpful in overcoming those issues. There are government systems that have been implemented to help people stay at home as opposed to going to nursing homes. You had home help, people coming into the house and taking Dad out for coffees, to the movies or the library for hours, really whatever he was capable of doing.
Q.6. Throughout your experience with dementia has there been times when you’re surprised by the effects it has had on your loved one? If so, elaborate on your experience.
Mary: Before I knew much about it, certainly. It was much worse than what I expected really. I knew that Louie Body was a very severe form of dementia but I had no experience with dementia at all, so its effects were unknown to me. I was surprised when he began to talk away at things that didn’t make much sense, things he especially couldn’t comprehend. The fact that it has been Louie Body Dementia meant that it was quite difficult in some ways, due to the fluctuation, although on the whole, the fluctuation has been helpful in other ways. On bad days Ray would be quite difficult, not understanding anything but in a couple of hours, he could be fine.
Alison: Fortunately I’ve learned quite a bit now and know so much about it so it isn’t as surprising as it initially would have been if I didn’t have the ability to go and seek information. Some people don’t know where to go but because I was able to access resources and educate myself I felt quite informed. What surprised me the most were his fluctuation really, he could be so good at times and then just change so quickly. We once called an ambulance because Ray was unable to talk or respond at all, although when we arrived at the hospital he sat up straight away and said: “What are we doing here!” It made you feel like a fraud *laughs*.
Q.7. Do you feel that you were prepared for the overall activeness of dementia or do you believe some source of information/Informative training would have benefited your situation?
Mary: I feel that they give you extremely comprehensive information on the Internet, the government that is. The government puts out about 8 or 10 pamphlets and they’re very good at giving ideas on how to manage when these things occur - I was quite impressed with that. Then there are the various groups you can go to, that seemed to have good information too. I didn’t go much though as I had access to the Internet, although I did attend once or twice for a private one on one session.
Alison: Alzheimer association provides a lot of great information. Although we have a very good level of health literacy so that’s probably why we found everything so helpful. Though not everyone has that same level of health literacy, so there would be a lot of people out there who wouldn’t know where to get this type of information. I feel that health literacy is a very big issue out there in the community.
Q.8. Do you have any tools you use to monitor your loved one's condition and/or stimulate their sensory, cognitive, and social activities?
Mary: I don’t think I did. His music was always a big thing for him. We played music a lot, all sorts of different music - so certainly that. Music has been quite therapeutic in a way and had the ability to change his mood.
Alison: We did a lot of socializing with the family although even that became quite hard as he wasn’t able to keep up with the conversations.
Q.9. Do you find that these tools are successful - if so, explain? If you do not currently have any tools, do you believe that they could prove beneficial to yourself and/or your loved one?
Mary: I saw having visitors as an Important tool. Having the ability to get out and have a one on one situation really seemed to benefit Ray. I do believe that there would be some types of tools that we could have benefited from although I’m not familiar with any.
Alison: Having that change of environment and stimulation of going out to different locations was helpful.
Q.10. Would you like to share a story about you and your loved one?
Alison: There was one time where we had to call an ambulance as Ray was unresponsive, unable to speak and or move. So we called the ambulance and took him into the hospital so they were able to figure out what the problem was. Although on arrival Ray seemed to make a marvelous recovery, sitting up straight instantly and asking what we were doing at the hospital. From there on he was as talkative as anything, unfortunately, he was also quite unimpressed by the whole situation.
When we were out of the ambulance he started to comment on the state of the hospital saying things like, “Oh this is a dirty place, look at this dirty place”. He then moved on to making remarks about the staff at the hospital. When the doctor arrived he didn’t even have a chance to speak before Ray had said: “look at you, you’re very little aren’t you!”. Quite embarrassed, I put my head in my hands and thought, what on earth is he going to say next. He was practically catatonic 30 minutes ago and now he’s fully recovered with an unfiltered need to speak his mind.
Shortly after the doctor had left a nurse came in to see if we needed anything. Ray had seemed to relax a bit and was having a seemingly pleasant conversation with the nurse, who was listening quite intently. All of sudden Ray’s mood swung, he then indignantly told the nurse, “Your face would crack if you smiled”. Surprised but unscathed by the comment the nurse proceeded with the conversation and then left the room, leaving in it just myself, mum and Ray.
After a short amount of time, Ray's mood had lightened again and we were making conversation between the three of us. Whilst explaining to Ray what had happened and why we were at the hospital, I could see that I had lost his attention. Although his eyes were looking in my direction, his expression was vacant and uninterested - I knew something was yet to come. All of a sudden Ray inhaled an enormous breathe and let out a bellowing yell that sounded like something mixed between a distressed whale and the grunt of a troll. Jumping in our seats we gasped and stared at Ray, who was now looking straight back at us. Half expecting him to let loose another yell, I braced myself.
Ray didn’t make any more comments or noises that night, Instead, he lay there in his bed, a small smile on his face and nodded off to sleep.