Depression to Dementia

Sometimes ignorance can be bliss, because it allows us to hope, even when logic tells us there is none. My wife was first in the hands of the Adult Mental Health Service, during this particular period of illness, almost 3 years ago. She had not fully recovered from previous bouts of clinical depression which had left her lacking any self-confidence or self-esteem, and with a seriously impaired memory. The current illness was, we are sure, a direct result of a host of personal traumas which took their toll on her.

She was admitted primarily because she was unable or unwilling to eat or drink causing her to become seriously dehydrated, and more and more confused and disoriented, which we couldn’t cope with at home. She was also seeing shapes and hearing voices, which were making her cower, even in the safety of her own sofa.

The diagnosis, after seeing a host of doctors and psychiatrists was acute psychotic depression.

Some months down the line, the psychotic elements had been quieted, but the depression was not lifting…. She was reviewed by the dementia team, the geriatric team and constantly by the psychiatric teams… no-one could come up with a diagnosis. The psychiatric team felt there was more than depression, the dementia team said that there was nothing in the countless scans and tests to point at a dementia diagnosis. As a result they continued to treat her for depression and continued to monitor for the other options.

Time carried on, after relations between myself and the consultant reached a depth that could never be repaired, she was transferred to a recovery and treatment unit, where she has been treated magnificently. Sadly however, there was still no improvement, and still no definite diagnosis.

To me, now over two years since her first admission, and 9 months since she had been able to speak or communicate something in my system was telling me that her condition was far more serious, and that although everyone was talking about when she goes home, I didn’t any longer believe that would happen.

As the months continued with no change, no diagnosis, hope was fading, but always there, it had to be, it was all that kept me going.

Eventually matters seemed to be heading to a crisis… I was diagnosed with diabetes 2 and made redundant. The diabetes is controlled with diet and exercise, and yes, I do pack a stone or two more than I should, so this inspired me to lose weight. The redundancy however, was a different thing, without a job I couldn’t afford to pay the mortgage, so would have to lose the house.

Imagine how that makes you feel… your wife is ill in hospital, may or may not ever come home, you can’t even keep the family home safe… It may not be justifiable to beat yourself up like this, but I can assure you it hits you hard, it takes away your confidence and self-esteem, puts you on the floor. It really does.

So, I made an appointment with her consultant to discuss the situation. She was so kind, so compassionate, but however you wrap it up, there is no easy way of saying “there is no likelihood that she will ever be able to return to the community, she needs too much care”

On top of everything else, this was a kind of final straw for me, I was totally shattered, demoralised, heading into depression. I was able to recognise how bad I was, and got to the doctor who gave me some anti-depressants to get me through this phase.

The antidepressants, and the family, kept me going, and I was starting to accept things, make progress, got the house on the market, started the process to get power of attorney, which is a fairly soul destroying process in itself.

We were scheduled a full case review in February, and my superb Rethink Carer Support came with my daughter and I to the meeting. The meeting went well, was calm, positive and productive. We finally had a diagnosis, vascular dementia, I was not surprised, it made sense and I had expected it, to be honest once you know there is no recovery the diagnosis doesn’t seem to matter so much.

So, my Rethink supporter and daughter were all concern for me, how was I taking it, was I coping with it? Well, yes I was…. Then… the following Tuesday night it hit me like a thunderbolt... this is real, it’s happening right now. My wife of 37 years has dementia, there is no recovery, things can only get worse from here on in… she doesn’t deserve this, no way… but it is happening, nothing can change it.

The sock full of wet sand hit me square behind the head again and left me in a bad way for a few days while the reality seeped in. So, it was with no little trepidation I face the following weeks… I was totally lost, bemused, un able to deal with basic things.

The day then dawned I was to start my new job as a Care Worker… I felt good, positive, and really up for it… felt so good to get involved in a job I was really keen to do. The training, for the first week, went really well, I was loving it, then the weekend came.

In order to move house, to downsize, I need to get rid of things, to get rid of some of my wife’s stuff that she will never again be able to deal with… so I started with her craftwork kits and materials… sorted them all out and invited the family to take what they wanted before I let friends have a choice and sent the rest to the charity shop. I didn’t realise how much this would upset me.

Monday, back to training, and a call from the hospital… your wife has turned aggressive… she has attacked a fellow patient. Next phone call was from the Social Worker to say he was identifying a place in a care home… now I wanted this, but these two calls added to the upset of the weekend… left me feeling so stressed…

The next day however, finished me… the call was to say that her condition was deteriorating because she was now refusing all medication as well.

I suddenly was aware that all of the stress and depression symptoms were crowding in on me again… I was really suffering… worried I was heading into depression again.

I went to work, realised I couldn’t take the pressure, didn’t need the stress of work right now and went home. As the day wore on I got worse, much worse, and went to see my GP next morning. The advice was to take a break, relax, do stuff I enjoy to reduce the stress and fight off depression… and when I felt like it in a week or two, to look for a job that wouldn’t challenge my emotions or put me under any real pressure… So, here I now sit, on the edge of depression, without work, without any motivation or care about things… and feeling wretched.

So, after all these years of depression, all her suffering and trials, my wife is now consigned to living in a nursing home, unable to look after herself, unable to communicate whilst I carry on in the world, living my life.

It would be foolish to say however, that all is well for me, I have lost the love of my life, but know that she is living a mile or so away in some sort of twilight world which we don’t understand… which frightens us. It has shattered my confidence, left me teetering on the brink of depression, lost me the chance of doing the job I want to do, and possibly any job, has put immense pressure on my family.

I know that there are many thousands of people in the same situation as me, each of us joined by a common bond, but each separated by their isolation in the position as carer. Each one knowing that Dementia does not rate very highly on the scale of research and care, and that as far as the medical fraternity and government support services are concerned, dementia, and mental illness sufferers cannot argue so are consigned to obscurity and a total lack of support and commitment.

We are all in this together, we are told… hmmm… I don’t think so.