Dementia Blog - Part 3 - Slow Dawning

When last you left us, Mother-in-law (M-I-L) was in respite care up in Northumberland. We were still in a state almost of shock. The prognosis for Father-in-law (F-I-L) was not good, he had the worst type of leukemia. This meant we were responsible for caring for M-I-L for a good while to come while he went in and out of hospital.

We set to, trying to decide whether M-I-L could or should go into a care home or whether she could care for herself at home with some assistance. F-I-L had already said his target and motivation was to have the house and his wife to come home to.

Of course, we knew we might have to pay for care arrangements in the medium to long term, but weren't sure whether short term arrangements were provided and what they were.

Needless to say now we needed all our professional experience of large organisations to be able to assess which institutions were involved and what options they provided. This was not at all clear form the Social Services literature or available information.

Central Social Services formed the policy making part of the "delivery team", with long term dementia care provided by a special care unit with facilities to support significant physical and mental deterioration. In-house care was provided by an outsourced agency, ostensibly on a 3 visits a day basis. We gather this varies council to council.

We worried whether M-I-L was really safe to be on her own in the house, and decided to explore the option of the care home.

Having got through the logistical nightmare of getting M-I-L back from Northumberland whilst taking our children to school, we planned that we would leave the girls with our good friend in Croydon at the weekend, and see how M-I-L took to the care home, perhaps leaving her there if it seemed viable.

When we got there, we realised that most of the home inhabitants actually had quite severe dementia. M-I-L was not really yet at that point, so we had to change plans and stay with her one more night, again no change of clothes, and then arrange for the local care agency to start coming in on a regular basis.

We were still worried at this prospect. M-I-L didn't cook any longer, and was no longer dressing herself or washing with any great consistency. We knew nothing about the assessment processes that would be needed, feared M-I-L's response to it all, and were conscious that F-I-L was not keen having strangers trooping about his house.

What was clear though was that care had to be provided in the place of residence. The burden of tax paying has to be taken into consideration in these matters, and this did make sense. In practice, no other local authority would have taken responsibility.

What was quite astonishing to us was how basic the assessment test was. Hardly any of the questions we thought were relevant, and quite a number of concerns as to what provision would be made for M-I-L while carers were not present.

Whilst we had several concerns about such care, we were now committed to going down this path. How would we come to terms with our own expectations and the service that was actually being provided ?

Dementia Blog - Part 2 - Respite

When last you left us, we had just discovered my father-in-law needed to go into hospital, and my mum-in-law needed care as she suffers from mild to moderate dementia.

During our visits to father-in-law, we discovered he had aggressive leukemia, and therefore needed an extended hospital stay and some tough chemotherapy, even to have a chance of surviving.

Clearly we needed to start planning for how to care for mum-in-law, as we were due to bring the girls home from holiday in France in just over a week and resume their lives in Harrow. How could we resolve the need to visit father-in-law in the Royal Marsden, where we would battle to get him admitted and eventually succeed, with mum-in-law in Worthing, look after the girls in Harrow and for my wife to deliver her responsibilities at work in the City ?

Luckily, (again), we knew an old friend of mum-in-law's living in Northumberland who had a career behind her running care homes. She kindly offered to take mum-in-law for two weeks respite care, so that we could start considering our options.

Before we took mum-in-law up, my wife flew back from France for 3 days, to help make arrangements and give me a break and get home for a much needed change of clothing. She helped make sure everyone was informed and agreed with the arrangements we were making. We again were lucky that the girls were happy to stay with our good friend in France until all the arrangements were completed.

My wife flying back to France to bring the girls home, I again took up care of mum-in-law. We then had a week taking turns to drive down to Worthing to care for mum-in-law before my wife drove her up to Northumberland, afterwards staying with a friend in Yorkshire overnight.

So now mum-in-law was safely in respite care, we could start thinking about longer term care options for her. What were they ? Could we afford them ?

Fortunately my wife's work were immensely understanding about our situation, and thankfully allowed her time off whenever she needed to deal with a specific and related matter.

So with one less thing to worry about, what should we focus on next ?

Dementia Blog - Part 1 - Initial Shock

Imagine your mother has been getting more forgetful over the past few years. Your father has dealt with it on a day to day basis, and so has become accustomed to dealing with the difficulties the condition causes.

And then, your father falls ill, and has to go into hospital. You live in a different part of the country, your spouse has to go to work, and you have small children at school to deal with.

How can care be provided for your mother ? What and who is involved ? How can you do your best for your mother ?

This is the situation my wife and I found ourself in recently, being on holiday in France when we were told the news about my wife's father.

We decided I should come back home early, as the girls had been missing their mother, who is the bread winner in our family.

I took over mum-in-law's care from another member of the family, all of whom had their own commitments, ranging from caring for a teenage mother and her baby to earning livings and running businesses.

The initial stages involved taking her to visit husband in the local Worthing Hospital, which of course is being threatened with closure. Is it reasonable to ask elderly people, and as we know Worthing's primary reputation is as a retirement centre for the elderly, to travel long distances to Brighton or Littlehampton for care ? Click here to vote to Keep Worthing & Southlands Hospital going in the place it is needed, local to the elderly and infirm.

Clearly this care for mum-in-law involved full time residency in Worthing, and was luckily only possible as my wife was on holiday from work and looking after the children in France. There was a limit to the amount of clothing I had brought with me, which would soon run out. What should we do next ?