Where Or Who Do You Go To When You No Longer Have The Strength To Be A Carer - What Do You Do?
I have tried so very, very hard to keep my husband, with Alzheimer’s, at home for as long as possible, and not place him in a Nursing Home.
He is only 65 years of age. He was diagnosed 10 years ago at the age of 55. I managed reasonably well for the first 9 years with appropriate help, and then behaviours such as anxiety, agitation, overstimulation and minor incidences of anger started to creep in, with the last 6 months being an absolute nightmare from aspects of respite, permanent placement and behaviour.
Six months ago, when I was starting to struggle with behaviour, I took my husband to our memory specialist and after 9½ years she felt it was time to introduce medication to try and settle him down. Within two weeks we ended up in emergency and he was admitted to hospital for anger, and to try and resolve medication issues (I had been trying to do this at home on my own with no experience and feeling totally helpless). During this hospital stay, my husband was being assessed for his behaviour, to see whether he could come home, or whether he would go to a nursing home where ever there was a vacancy, which could have been anywhere - in wards, sharing rooms, in any facility, without any choice.
Also if his behaviour was diagnosed as “delusional” he would have gone into the mental health system and would have been sent to Glenside or Hampstead. Our family wanted to have the choice to place the husband, father, grandpa that we loved and cared about so much in a facility that understood and cared for dementia residents in a loving, kind, caring, supportive environment.
Isn’t that what anyone would want for the person they love?
There were many issues in hospital due to my husband having dementia, but after ten days he came home a lot more settled, but had declined quite a bit from his stay in hospital.
This was four weeks before Christmas.
Respite in Aged Care
At Christmas, I placed my husband in respite for a week, as I felt I needed to spend Christmas with our children and grandchildren, and to take a break after spending nine hour days at the hospital for ten days. The nursing home facility for the Christmas respite looked after my husband really well and understood about dementia care, but my husband never accepts being left in respite in a different environment away from his home, so hence again we had another slight decline.
Trying to find appropriate pre-booked high care respite with dementia at this time was so very, very difficult. I printed off the high care residential facilities from the Seniors Information Service which covered North, South, East, West, Adelaide Hills, and Fleurieu. There were 146 facilities totalling 9,780 high care beds. There were 43 respite beds but only ten respite beds in a high care dementia unit that I could pre-book, according to the seniors listing, and that went as far away as the Fleurieu.
Residential care facilities do not want to accommodate high care dementia respite. At the same time I looked up the respite vacancies for high care in a dementia unit for that day. There were 75 listings of availability - 41 were share. 34 were single rooms, 1 wanted female only, 9 would not take dementia, 9 would only take mild dementia, 6 were not secure, 3 were in the country at Kadina, Pt Broughton and Meningie, 2 were extra services and 1 was not listed in the DPS Guide to Aged Care.
This left 3 out of 75 beds for high care dementia secure emergency respite!!
It is beyond me how this is supporting and encouraging carers to keep their loved one at home for as long as possible. I strongly feel respite for people with dementia, specially with high care needs, are so very much discriminated against.
Permanent Placement In Residential Care
It was also on bringing my husband home from hospital, that I decided I needed to get my applications and choices for permanent placement organised. I had already done a lot of looking around and had all the paperwork at home, but I just had not been ready to send them off, but now I felt I was ready. I had found a facility that was appropriate and close to home, so I submitted the paperwork.
As time went on, I decided to go further away from home to have more opportunities for placement, so have now submitted applications to six facilities, and I just play the waiting game. It has been 5 months now since I lodged the first application, and each day since then my caring role has just got harder and harder, some days I just do not know how I can keep doing this. I keep ringing the agencies week after week advising them of my urgency.
I have been told right from the very beginning that availability goes on need. These agencies have never seen or met my husband and so I questioned them, “How do they understand our need when they have never met us?” And the answer is always “we go by the ACAT”.
As our ACAT was done 18 months ago (high care ACATs do not get reviewed under the new system) and the dementia has declined to a point where the ACAT does not reflect our true current urgent need, how can we be assessed correctly!!! I am also aware that if a bed becomes available, if there is someone in hospital or living at home on their own, they will go in before us, as their need is higher.
When I think of the facilities that we are waiting on having 10 high care dementia secure beds out of 62, 18 out of 57, 24 out of 147, 16 out of 80, 12 out of 100, urgent placement is working against us. Put together with the patients waiting in hospitals and those living on their own needing beds before us, I do not like our odds at all. Surely someone can work out a better system than this.
One agency told me to go to our doctor and get a letter informing them of the urgent need and my husband’s current medical diagnosis as our ACAT does not reflect the current situation. I have also been told that men are harder to place than women. On top of ringing them all weekly, the system is so very wrong when I am not able to care any longer after 10 years. As if I haven’t got enough to do with providing care on my own 24 hours, 7 days a week for my husband with dementia, let alone chasing this all up over and over again. I have also been advised by many people to get a consultant, as “they can get you in quicker”.
I spoke with two consultants, who both said “yes”, it is better to have a consultant, as they reflect the true position of the person requiring placement, whereas someone doing it on their own doesn’t reflect a true account. The two consultants I rang charged $880 and $990 flat. If a person does not have the money and cannot afford this, it is grossly unfair. I decided to ask all the admission officers at all the agencies with whom our forms are lodged, whether having a consultant would help our cause. They all said “no, it wouldn’t make a difference, it goes on need”.
Hence we are back to the point of them not understanding our current need due to an 18 month old ACAT!
So many days I say to myself, “I just cannot do this any more”, but what can I do?” Some people have suggested respite, but during this current financial year I have been accessing respite due to a hospital admission, Christmas, and a medical emergency with our daughter, to the point where I have very little left. At present I am just hanging on to the last little bit in case I do desperately need a break, but then it can only be a week, as after that I will have nothing left.
People say, “But you can get an extension from the Commonwealth Respite and Carelink Centre (carers entitlement 63 days per financial year). Yes, I am able to get an extension, but my biggest problem is that through our EACH-D package (support in the home) we are only entitled to 56 days per financial year and I only have 6 days left. Once these are used up, we completely lose our EACH-D package, which means I would no longer get any support in the home at all for personal care, feeding, cleaning etc.
If I have to keep my husband at home awaiting permanent placement, I cannot do it without this support, hence I am very hesitant to use up these last few respite days before the new financial year commences. I do not understand why the respite days within your package do not match up with the Commonwealth Respite and Carelink Centre days.
Also if we have three days of assistance in the home a week through our package, I do not feel it is fair that if my husband is in respite for a week, that we lose seven days, and not only just the three days we normally use. While all this waiting and messing around is going on, in January I had a medical emergency with our daughter, who has two daughters aged 3 and 5 and resides in Canberra.
I had to find emergency high care dementia respite for my husband. This was a most traumatic experience. I was not sure how long I would be in Canberra, so this made the whole situation so very difficult. As before, many facilities do not do respite for dementia, then high care on top of that, also needing it urgently and not knowing when I could get back, virtually made it impossible. I did find a facility 32kms away from home, but had no idea about the facility or its care for people with dementia. I ended up being in Canberra for 3 weeks while our daughter was admitted to hospital. I looked after our 2 little granddaughters, and supported our son-in-law. On returning to Adelaide I needed a week to recover, so my husband ended up staying in respite for a month.
When I brought him home, he was totally traumatised due to the facility having no idea how to appropriately care for people with high care dementia needs. My husband became a very, very angry person. We couldn’t get near him to do personal care (especially males). I brought him home on a Saturday and he would not allow me to clean his teeth successfully until 5 days after bringing him home. It is now seven weeks since I brought him home, and am still having problems with behaviour as a result of inappropriate treatment for a month, and of course, he has declined more.
Even more reason to need permanent placement urgently, but I keep waiting and ringing. Every day the phone rings I think it could be the nursing home, but each day goes by and it does not happen, the days turn into weeks, and the weeks turn into months, just waiting and waiting, and feeling that I just cannot keep doing this any more after 10 years. I also know that while my husband’s name may be at the top of the waiting lists for need and urgency, we could still miss out if a person needs to be placed from a hospital or if they live alone. I feel this is how most of the beds get filled - through emergencies - but we have no emergency, so we just wait.
I am aware that when you do get the phone call to say there is availability, you still have to go for a meeting (interview) with the facility to see if you are appropriate. I know a person who got the call thinking this was it, only to find out there were three others being interviewed to see who was the most appropriate. I have been told (even by people managing residential facilities) dementia residents with behavioural problems may not be accepted for being too hard to manage.
I have been dealing with changed behaviours for six months on my own everyday. I have learnt tactics, diversions, that behaviour does not last-it eventually subsides (my husband exhausts himself from the behaviour so eventually he falls asleep). I know the triggers or that it could be due to illness, pain, medication and I have used the Dementia Behaviour Management Advisory Services (DBMAS) constantly. In six months I have learnt usually the behaviour happens for a reason, and it is all about how you handle and deal with it. I have no training or experience like the staff in residential care facilities. Behaviour can be so very much a part of dementia, so it is beyond me how facilities with dementia secure units with trained staff can have this attitude. It does not help me. I feel people with dementia who have challenging behaviours are also discriminated against.
Dementia care is so very different and so very complex. In fact, since being diagnosed with Alzheimer’s at 55, we have never been so discriminated against for also being under the age of 65! Please let a permanent placement in a kind, loving, caring dementia unit come along very, very soon as I cannot do this any more.
Where do I go, what do I do and who can help me?