Not the Best of Weeks

Well, last week was a pretty damn bad week, it ended with me being severely stressed in a way that hasn’t happened for a while, so I feel I need to write about it. This is not looking for sympathy, what is, simply is, I cant change it, but I have moved on from it.

To make sense of my week I have to recap briefly on my history… My wife has a track record of depression, and became ill again 3 years ago, and has remained in hospital throughout the time. I have known since last October that her illness meant she would never be able to rejoin the community, never be able to come home. I have had time to come to terms with that.

In March we finally got a diagnosis, not a good one, it is vascular dementia, and that we will need to find her a care home. The hospital unit she is in, who have been truly superb throughout the 15 months she has been in that particular unit, is no longer the ideal place for her, and they are working with me to find a suitable home.

We also have a Social Worker (I will henceforth call him Jim, because it is a simple short name, easier than keep saying social worker).

Any, a few weeks ago Jim started looking for a home, we had discussed options, and were looking initially, for homes relatively convenient to where we live, to make it accessible for the family. Nothing was happening, so I contacted a local home, a very prestigious home.

This is now three weeks ago, I got a call from this home, to arrange to visit my wife in hospital to assess her. I don’t know if this was in response to my application or Jims to be fair. Anyway this was arranged for the Tuesday. On Friday Jim told me he was seeking appointments for two other homes, one of which phoned me and the hospital and we arranged an appointment. The other one simply turned up, without morning on the Monday.

On Tuesday we had the first assessment, but the lady had to come back after a funeral, to complete it. Sadly she came back just in time to see my wife laying into, and pummelling, a member of staff, and having to be restrained by thre people, sedated and secluded. When the other assessor arrived a bit later, she was comatose, having just come out of seclusion and being sedated.

Lets call the houses A, B & C. Jim phoned to tell me that B & C had turned her down, and that A had accepted her, he confirmed by email, but unfortunately the email said A had turned her down and B had accepted her.

As A & B are a good 40 to 50 minutes away, I asked if he had considered any more accessible homes. No, he hadn’t.. so I recommended one to him, who assessed her the next day and virtually offered a place.. they accepted that the aggression was connected to some medication that she was no longer taking.

So, eventually, we come to this week… lets start on the Monday.

In the morning we visited this care home, and took my wife’s principal nurse with us, the house was excellent, the greeting from the staff friendly yet professional. However, looking round a care home for your wife, who doesn’t know about it, who knows something is wrong but probably not what, is a fairly miserable exercise… talking about your wife in terms of how much help and support she needs… what the problems are and so on.

Anyway, dropping the nurse off afterwards, I visited my wife, who was in a bad state, very down and subdued and very hard work. Not an pleasant experience

He Tuesday, we had a CPA, everyone involved was there, I had my daughter and my Support worker there with me, and god knows I needed it. I didn’t learn much new, the discussion was amicable, constructive and friendly. What I did learn from the Nurses report was that my wife had been secluded again the previous night, had been in bad state and had to be sedated again.

The meeting progressed, and we all had to discuss, in front of my wife, who looked lost, tearful, frightened throughout, the options around nursing homes, power of attorney and other legal requites as though she was not there.

It also became clear during the CPA that Jim had misled everybody about the homes, none of them knew what he had been talking about and had different ideas of what he had said. At least I was not on my own on that one.

After the CPA, which lasted a good hour, I had the task of going through the Power of Attorney paperwork with her, it is a legal requirement that I do my very best to be sure she understands it. I hope you haven’t had to go through that experience, but if you haven’t, I wonder if you can imagine just how bloody painful this morning was.

Wednesday was a different day. I went out for breakfast with the family, which was delightful, and came back so we could finish relaying the floor in the living room. Now this was a pressure situation as well, because in order to sell the house it became necessary to redecorate, which involved relaying a section of wooden floor. Now this was pretty hard work, as was the decorating, especially as your heart isn’t in the decorating, because you don’t really want to move… I have to for reasons we needn’t go into. But I do not want to. That makes it very tough, very tough indeed.

So, Thursday, I spent al morning, in fact until 3:00pm finishing off the living room just in time for the estate agent to appear and take the new photo of the new look living room.

I then had an hour or so before going off to my mums for dinner. I picked up an email from Jim. He told me that the Care home had now decided not to accept my wife. That was a major blow.

What was worse were his explanations..  he said she had been rejected because she is too young and will soon be back in hospital. Can you imagine what impact that has on someone in this situation. If you can’t, let me tell you… it is bloody devastating, totally devastating and frightening, especially when you can’t get hold of him to ask more details. Why will she be back in hospital? The doctors have never suggested that.. what’s going on?

He also said that the hospital were pushing to get her discharge to a home in days… so having only the home, whether it be A or B, which is totally inaccessible, and I hadn’t seen because I didn’t know until now which one it was, I was in a very stressed state… anxious, worried, frightened, couldn’t think straight, couldn’t sleep at night.

On the Friday morning I contacted the home. The things that Jim had said were not true. They had turned her down but for perfectly valid and acceptable reasons. The home were also disappointed that I had got the message in an email, he said he would have phoned me, but Jim had promised to do so… he didn’t

I mailed Jim next day to put my views forward, maybe none too gently… but having put me through this after the events leading up to it was too much for me.

I had a call from the hospital who confirmed that there was not the urgent pressure for a discharge, they, like me, simply want the best conclusion for my wife.

I went to see the manager of the unit Jim works at, it was someone I have met previously and worked with on a project, so we had a fairly constructive relationship and conversation.

It seems that Jim did not know that the homes he had selected were so far out, and didn’t actually know any closer. I suggested he may have access to a map, or have noticed when he went out to the house. The explanation was simply that he normally works in London. Doesn’t change things in my view… he should know this stuff, or at least check it out.

Anyway, not a very good week, but don’t think that this was all that was going on…

I learned that a dear friend has a potentially serious illness, I had regular calls from the hospital… My wife had been secluded 4 times in the week, twice for attacking members of staff, once for attacking another patient, and once for attacking a visitor.

On top of that the incontinence was getting worse again…

And finally, what I think broke my heart… was that whilst I was with her one afternoon, a nurse came in and said she had found this in her sink… it was most of her engagement ring… but there was a large section of the ‘ring’ bit missing, so it was just a semi circle… the first time since she had it it had been off her finger.. and she was not aware of it.

Yes, I know others have had worse weeks than this, I know that to some a week like this would have been a bit of a relief… but for me, already exhausted, emotionally, physically and mentally, the pressures and stresses of this week just were too much for me… I couldn’t take another like this.