It is quite common in our house these days to start a sentence with the word "Well" followed by a pause before jumping into a great long ramble. This usually comes in response to a question along the lines of "What happened today".
So in case you are wondering what has been happening here let me tell you.
Things have moved on apace with Man. I will not bore or regale you with everything because you really won't want to know and I don't really want to share it all. Some of the high points (low ones really) and some of the things which might be of use/interest to anyone else in similar circumstances are as follows.
All being well with a last couple of medical tests Man is moving to a nursing home that is many many miles away from us and we will no longer be looking after him. He is moving to be nearer to his other son, which makes sense, but is sad too as we will not see him much. Of course he will still be his family, but it is odd to have a family member moving so far away from you, especially at this stage of their life. How things will work out we don't know yet, but if you don't give it a go you never know and this was the only way he would agree to move out of his house into a nursing home so we have to go with it to ensure that he is safe and cared for.
Things have been really tough since Man had the stroke, he still has pretty much the same left side weakness that he had after the stroke, so he cannot walk on his own, or without a frame. He stopped eating and has been very ill because of that, after about 10 days of me going in every day to accompany him and encourage him to eat for 1 meal a day that has improved a little and he is no longer on a drip. We really thought we were going to lose him at one stage, but he has picked up a little.
Sadly it seems as though he has vascular dementia. This has left him very confused at times, we have dealt with several episodes of him thinking he has had things stolen and other events. This will probably get worse, although apparently it is a kind of dementia that causes people to become more ill in stages. They go along at a level for some time and will then suddenly drop quite a bit and then go on again and so on. We have certainly seen Man dropping a lot in the last few weeks and it has been horrible. He is also having hallucinations which are causing him to have more falls.
So the move to the home cannot come soon enough to ensure that he is cared for and most importantly as safe as he can be from the harm that he could do to himself. Of course Man doesn't understand this at all which is very hard.
If you want to know or chat to me any more about this let me know, but I won't write any more here for now.
Family have been so so..... Frustrating at times and then alright at others - mainly when I just jumped in and told them what they had to do!! We have been clearing out Mans house which has been a horrible task, firstly because it is so sad, second because it is my husbands family home which is even sadder for him, and thirdly because of the amount of stuff and the filthy state everything is in. Not fun at all. We will get there though and it is cathartic clearing out rubbish which helps with the other stuff, although so far we have mainly cleared rubbish and not things so I expect that it will get harder before it gets easier and then of course we have the actual house to deal with.
The things I have learned in all of this, which may be wildly obvious to some of you, but were apparently not obvious to me as I had to figure them out are this:-
Really pin the hospital down and find out what treatment someone will get, what the routines are, how you can find out what the menu is, when doctors rounds are and who the matron is. They hospital will not just tell you this stuff and unless you are there when the doctors do their rounds, talk to the staff like physios yourself you will not find out anything.
This will then enable you to turn up, find out what is going on and keep a track on progress/action/treatment.
Ask for a specific diagnosis, even if this is still fluctuating. They will not tell you unless you ask specifically, but ask and they will tell you.
Turn up for meals if your loved one is not eating, you can help and encourage them far more than anyone else can or will, also you will then know what they are eating.
If you have a complaint or concern, raise it and it will be far more likely to get sorted, don't be fobbed off ask to speak to the most senior person - most likely the matron - and insist on discussing it and getting an answer. Sit in the corridor outside their office if you have to until you get an answer - yes, you can tell, that is what I did one day, well, it was the nurses station but same thing.
Find out what is happening with your loved ones laundry, it might be obviously left out for you to take home, but it might not be and you might not find it or realise you have to do the laundry until the person has no clean things left. You will need to ask about this.
If you need other family members to do things - unless you have some super wonderful family, which I hope you do! - don't assume they will do things, and don't assume they will do what you ask them to. If you need to tell them - in a nice way of course - then tell them and that really is OK. It isn't OK to be nasty in any way, but if something needs doing and they need to do it tell them, don't just assume they will do it.
Although it takes ages to write out long emails it can be a good way to keep in touch because you can send it to several people at once to update them. Also, you can look back and know what was said, or what you asked different people to do if you forget. Plus you can always write a great long litany out and get it out of your system and then go back and edit it to say the things you really need to say, not just the things you want to get out of your system. If need be, write it, save it in drafts and then go back and edit the next day before sending it. Don't send an angry email when you are angry or emotional as you might say something you didn't really mean or want to.
If you are clearing out, don't haul things to the local refuse site. Just hire a skip or dumpster. Yes, it is upsetting to fill one up, and yes, it is expensive, but it saves so much time and in the thick of these difficult situations you need as much time as you can get for yourself and to be with your loved one, not queuing up to unload your car.
Share what is going on. You will be surprised at the people who are going through or have gone through very similar things and will totally understand and offer support and suggestions, or just listen and you know they "get it". We really should talk about this stuff more often! A trouble shared is far more than a trouble halved.
That is it really. Things are moving along, Man really is not good and will not get better, but we cannot do anything about it other than make sure he is cared for and love him.
I don't know when I will be "back" although as promised Five On Friday will continue. Right now I am thinking of aiming for two or three weeks time when Man has moved and I have had a tooth extracted - ouch! - and I will feel in better form again.
I hope that some of this might be of help to someone, to know that you are not alone if nothing else.
Thank you for listening! See you soon.