Hi again everyone, and thanks for your kind comments: I’m glad my blog has been helpful and informative.
I was thinking back to when I had to begin to look for residential care for Graham, first in respite blocks and finally a permanent location. As you’re probably aware, there’s a chronic shortage of residential care accommodation, both respite and permanent.
My first experience was when I needed to arrange a fortnight’s respite care; by this time Graham was walking day and night and I was getting virtually no sleep: I was exhausted. It was recommended that Graham go to a certain facility about 15 minutes from where we live, so I was pleased to find a vacancy. This turned out to be a dementia lock-up; I can’t describe what a horrible experience it was when Graham’s face appeared at the window of the locked Nurse Unit Manager’s office, calling me to let him out. I’ll never forget that!
I was shocked to be asked to indicate what my instructions were if my young husband had a life threatening medical crisis while he was in this facility. I was totally unprepared for these questions, even though Graham and I had often talked about this and agreed on no resuscitation, no gastric tube, etc: it was confronting! Not long after this, I found out this is called an Advance Care Plan or Directive and I went into the MyGov website and completed one for both of us; of course, his current residence also has that in writing, so that’s all in place now. We’ve also discussed this with our family and to be honest, it’s a step I recommend for all families – you never know what lies around the corner and it’s so important that your loved ones know your wishes, so they can honour them in a time of crisis.
So this facility turned out to be hell for Graham, frightening and traumatic, both because of the type of residents he was with and because of his advancing dementia. I picked him up three days early because I had heard from visitors that he was terrified.
Not long after this respite event, we experienced the Going to Stay at Home course run by HammondCare in April 2013; this course was a wonderful help in educating us carers to see what aids were already in place to help with caring for someone as long as possible at home and also with giving us guidance on how to choose permanent residential accommodation and how to be an advocate for our loved one in care.
The course entailed living for a week in a room which was exactly the same as those being occupied by permanent aged care residents. This gave me my first experience at seeing what it “looked like” to have Graham living in care and for me it gave an extremely important insight into how this could be much better than what I had envisaged as nursing home accommodation. My only knowledge up to that point had come from the disastrous respite facility and from many visits to friends or relatives in multi-bed rooms where everything smelled terribly and where the lounge room was filled with wheelchairs and bed chairs, all positioned around a television and all occupied by staring or sleeping residents.
In the facility at HammondCare, there was a central communal kitchen, dining and lounge area; residents’ rooms with private facilities were arranged around the communal area. Graham settled very comfortably at night and seemed to feel safe and secure. By the time the week was up, not only had I learned a great deal about what to look for in a nursing home, but I also felt very much relieved that not all aged care is the same.
Six months later, I again needed respite and this time I had to drive two-and-a-half hours from the Sutherland Shire to the Central Coast because that was the only high care respite bed available! A couple of days into his stay, the Registered Nurse responsible for him rang me and said that Graham should be in permanent residential care, as his needs were now beyond what I could be safely expected to provide. I knew in my heart she was right, so I had 10 days to find a bed! I also knew that it would not be possible for me to bring Graham down to Sydney by car, because the trip up to the Central Coast had been a nightmare drive: he was no longer able to understand or tolerate being a passenger in a car.
So now I began researching, visiting facilities within a reasonable distance; most of these were multi-level, where residents with dementia were higher than ground level in secure areas. These had glossy brochures extolling the virtues of the facility’s decorative artworks, comfortable lounges and elegant décor. One facility would not even say whether they had a vacancy or not until they interviewed Graham! I was beginning to wonder whether I was going to find anything in time, although I knew our church family was praying for us and I knew God would lead me in the right direction.
I spoke to a carer friend about my frustrating search and he suggested that I might like to visit a little nursing home where his mother had spent her last years. I took his advice, even though it was located over 30 minutes away by car. From my first few minutes of being in the home, I was struck by the demeanour of the staff: not only were there a number of them around, coming and going, but as a staff member approached or walked past a resident, they would greet them, perhaps touch their hand, give them a hug, or just a quick greeting. The interview with the Director Of Nursing confirmed that the highest standard of person-centred care was their goal.
This is a small, single-level home with only 48 residents; the staff-to-resident ratio is high; many staff are long-serving, so that they get to know the residents, their families and their needs really well. There is always a RN on duty. I have never been ignored when I have made a comment about Graham’s care; the DON is always available and ready to take appropriate action where there is a difficulty. Two dedicated lifestyle officers work hard to engage those who are able, although almost all residents have some degree of dementia and the majority have advanced dementia; a few are simply frail aged. There are regular events to engage everyone and many “smile” days on the calendar.
This is a secure facility, but the front gate is at street level and residents are free to wander around the front garden and experience the passing parade. The interior is clean and more intimate than the large, modern, “pretty” facilities which are being built now – it’s much more “homely”. There is rarely an offending smell which doesn’t get taken care of immediately.
Graham doesn’t have a room on his own and personally I believe that is a significant plus. There are always staff or residents or visitors in and out of his room, so when he is there, he’s not left alone without personal interaction.
To summarise, the reason I believed this home was right for Graham was that I saw that he would be treated as a person, that the staff were keen to become familiar with his unique needs; I was relieved to find that my trust was well-founded, as Graham very quickly seemed to settle in and to feel safe and secure: there was no asking of when he was going home, except on rare occasions in the early months.
As the time has continued, after two-and-a-half years, with other facilities opening very close to our home, I have no intention of moving Graham, even though it would be more convenient for me: I have found him a home in which our “new family” will walk compassionately with us through to the very end of this difficult journey.
So in summary, I suggest that perhaps these questions may help in making your choice:
Great story. I worked in my local aged care facility for many years. It was well run with really dedicated & well trained staff. It has now deteriorated & this concerns me greatly for the same reasons Lesley mentioned, staff really not suited to dementia care. My concern is also very personal as my husband was recently diagnosed with dementia & his condition is deteriorating rapidly. My biggest fear is that I will not be able to care for him at home.
Thank you Imelda. ???? God bless.
I miss you like crazy Imelda and especially my special man xxx I am excited for your Diploma. So proud! I would love to catch up soon xxxxxx
Great article. Couldn't agree more with differences in facilities. We are currently doing some research on various places so we can prepare ourselves for when mum needs to be put into residential care.
Thank Imelda. This is most helpful. Hopefully this day is far away for Mike yet, but it's great to have your experience and recommendations to guide us when the time comes. Linda
Thank you for such an informative description of your search for a facility. I know, only too well, what its like to find a "home" for my mother. Many tears were shed. It really does come to the staff doesn't it??
I loved reading this! I worked in a locked Dementia ward in a Newcastle facility. I also feel that dementia residents need routine and familiar faces. Not everyone is suited to work with residents who sadly suffer from dementia. I know longer work in a facility and my main reason for leaving was because my boss at the time decided to rotate staff, regardless if they were suited to work in a dementia ward. I think it made the residents unsettled as they had nurses caring for them that did not want to work there. Routine and familiarity is important to sufferrers of dementia. I loved this blog, it was spot on!