To help create awareness this Dementia Action Week, we invite you to read this powerful story shared by a Maranoa Dementia Services client’s loved one that challenges the misconception about choosing residential care for loved ones with dementia. To remain anonymous the Maranoa client is referred to as ‘R’.
I wanted to share our story to help dispel the myth/feeling that choosing residential care is somehow a failure or a lesser option.
I hope I can do this by sharing our experience and how we made the choice for R to enter residential care. I’ll try to pass on any tips we learnt along the way.
Very early on, when I had energy and perspective, I decided that there were three ‘red flags’ that I would use to indicate when it was time for us to consider residential care.
These red flags were:
1 if I could not keep R safe
2 if I did not feel safe
3 personal care issues became too much (either for me to manage physically or for R’s dignity)
I also decided I needed to have a plan of action in case of an emergency.
I really wanted to have done the hard thinking about care options early to make sure that R had the best outcome under any circumstances.
We have all heard of families having a crisis develop and consequently having to choose in haste or having to settle for whatever was available and having limited choices as a result.
So, over the course of a year when my energy levels allowed I began to inspect a few potential facilities.
It is a draining and stressful process but starting to do it early helped, I could do it at my own pace.
I made a short list of possible places.
My sister, who worked in aged care, came with me to double check my impressions and to give her perspective.
It is challenging visiting facilities but you very quickly work out what is important for you and for your loved one.
The things I looked for were: (some of these were passed on to me by a friend who had already been down this path)
- is there a specific Memory Unit
- Is the unit staffed by permanent staff? No agency staff, we wanted familiarity and continuity!!
- do the staff have extra training in dementia care (more than the rote “all our staff have dementia training” that you get told in most aged care facilities)
- is there a registered nurse in the unit at all times
- what is the staff/patient ratio
- are there daily programs, do the residents appear engaged and appropriately supported.
- Are there activities, art therapy, pet therapy, music therapy etc
- do the residents have access to outside space
- within the unit are there interesting spaces for residents to sit with family or to enjoy a quiet moment
- are the families of other residents happy with the care their loved ones are receiving.
- what is the Unit Manager like? What is their healthcare background, how is the unit run, are the staff supported
- Is there in house palliative care
- is the facility geographically close to your home
Then most importantly what does your instinct ‘your gut’ tell you.
You are the one who knows your family member best, does the place feel right for them.
During this planning period I also consulted an Aged Care Financial expert to give me some understanding of the financial options/choices we might face. It is a complex area and one I had no knowledge of, so expert help seemed like a good idea.
Establishing this relationship early was very helpful.
Later when we had made the decision they were able to peruse the contracts to reassure me that it was all standard and above board.
They already knew our financial details so they could give specific answers tailored to our circumstances. That helped take some of the pressure off at a very stressful time.
As is often the case the decision to move R happened very quickly (thankfully it was not in an emergency).
After a few particularly difficult weeks I thought the time was right to register with our facility of choice, to put our name on the waiting list so that when the time came we would have priority.
At this time all the red flags on my list had well and truly been reached and I was struggling to manage.
When I went to lodge the forms with the nursing home the manager informed me that there was a room becoming available and as vacancies did not come up very often she suggested we take up the offer.
We had a family conference and agreed that it was better to act rather than risk missing the available place in the facility that was by far the most suitable we had seen.
Initially I worried that we made the decision to move R a bit sooner than we needed to but in hindsight I am very grateful that we did it when we did.
The staff had a chance to get to know R before he became less communicative.
R was able to establish himself and his personality. So I know that he is known and understood by the staff. They know what his likes and dislikes are and they know that he has a cheeky streak.
Ten months later how are our lives now?
It goes without saying that we are incredibly sad – that sadness waxes and wanes but it never goes away, we have to live with that.
R is receiving a standard of care that I could not hope to offer him. He has a team of medical professionals who visit on site (GP, geriatrician, dietician, dentist, speech therapist, podiatrist, and physiotherapist – these are the ones R has seen so far).
There is excellent communication within the medical team and with us, the family.
I am included at each step and I am usually present for each consultation.
- When there are any issues an expert is only a phone call away.
An example of this is: over Easter R did not seem himself but we couldn’t work out what was wrong – we were thinking maybe a sore back, a strained muscle. When the personal care worker was showering R she saw a rash on his back and immediately realised it was a shingles rash.
The geriatrician was called, he visited that day to confirm, prescribed anti virals which were administered to R later that day. That all happened on Easter Saturday!!!!.
As a result of the quick diagnosis and treatment R’s symptoms were minor and he made a very speedy recovery.
If I had been dealing with that situation at home, particularly during a holiday period, it would have been a very different outcome.
I can say that friends and family are not as worried about ME as they were.
Our children know R is well looked after and they can see that the strain on me has reduced. It is a huge weight off their shoulders. They have busy jobs and are establishing their lives. At least now they aren’t burdened by the worry of looking after me as well as worrying about their Dad. That is a positive that can’t be underestimated.
For better or for worse I am part of the furniture at the facility. I visit daily and I am welcomed by the staff. They often provide me with lunch (or dinner) to encourage me to feel welcome and to share a very important part of R’s day.
I occasionally join the group when they have a bus outing or special event (shades of our very happy time at Maranoa)
I can say that now the time I spend with R is peaceful.
He is much calmer and more settled (everything in his environment is designed to achieve that result). He knows the routine and the staff, he feels safe – safer than he did at home.
I feel I have found R again.
I can just be with him.
He isn’t a problem to be solved, I don’t have to struggle to get him places or get him showered or changed. There is no pressure anymore.
When we are together we listen to music, walk in the beautiful gardens, spend time with friends and family who come to visit him, share a meal, and look at photos together.
I still have a very active part in his daily care but if there are any problems I can call for help. I am no longer doing this on my own.
Finally I will say what we all know – there are no easy options and every family is different and every individual is different. The one thing we all share is that we are trying to do the best for our loved one.
For us this choice has proved to be the right one.
I feel it honours what R would have wanted for himself.
We all find it incredibly sad not having him home with us but I am happy that we made the right choice.
How is R, how has he made the transition?
He has adjusted well, as I said he feels safer, he is calmer and very settled.
We have made his room as much like home as we can. We are there as often as we can be. When I leave I never say goodbye, I have tried to create the impression that I am nearby (maybe in another room or ‘popping’ out to the shops) and that I will be back soon.
And that really is the case. I am only a phone call and a 10 minute drive away.