When I went to the hospital ten days ago, laden with goodies and massage oil, I was horrified to be turned away. I was told I couldn’t see Leaf because the ward was ‘locked’ to visitors. Well! I hit the roof, made a real exhibition of myself probably. The nurse got rather agitated and said she’d call the doctor. She did and I waited in the reception area. The doctor arrived and I asked if we could go outside to talk because I can’t breath properly with a mask. We did and I let rip, poor woman, I was so upset and angry. I wasn’t blaming the doctor or the staff, they were under orders, but I wanted to see Leaf to at least be able to explain why I wasn’t with him. I pleaded and eventually the doctor went inside to see what she could do. I sat down on a bench and waited, still quivering with fury.
Ten minutes or so later, it was a huge relief to see him walking through the sliding doors on the arm of a nurse. When he saw me huddled on the bench obviously distressed, with a huge grin, he said loudly and clearly ‘Ca c’est ma femme!’ (this is my wife!) They sat him down on the other end of the bench and he reached out to take my hand. They didn’t like that, but he clung on, so did I. I explained what was going on, told him it was only expected to last a few days (huh!) and that I would ring him every day and try to get a tablet set up for him so we can do video calls. It was cold and damp outside and Leaf had started to shiver, so they took him back in with lots of love and kisses following.
The next day, I rang him to explain again why I wasn’t yet able to visit. He was pretty coherent and says he’s okay but that some of the other people are a pain, shouting and swearing, and the food is slop – we know that, which is why I’d had a pasta dish in my basket when I was turned away. Once more, I explained why I can’t see him and comforted him as best I could, tried to reassure him. He seemed to take it reasonably well.
The following morning I was worried to learn that he was strapped to his bed again and very low. I understand why he has to be restrained but it bothers me a lot. Where must he be emotionally and psychologically? Both those ‘work’ even if the left side of the brain isn’t doing so well. Poor guy, it must be absolutely horrible having something stuck up inside. The idea makes me shiver.
A couple of days later, another restriction to be foisted upon the citizens of some departments, was a curfew. 9pm-6am. Our house is in a small village on the borders of Gers, Hautes-Pyrénées and Haute Garonne. Postcode wise, we’re in the Gers and we didn’t have a curfew. The others did. A clever virus this one!
Since then I’ve had two really good visits to Leaf and, thank God, he’s not strapped down and doesn’t seem bothered by the catheter.
Now, it’s a national lockdown again, for all the actual good it will do (they should call it house arrest or a lock-up). If they want to ‘flatten the curve’, stopping testing would have the necessary effect on the figures, what the reality would be, no-one seems to know. The statistics appear to be what the so-called ‘authorities’ are obsessed by and we all know they are easily manipulated.
Amongst those of us who are allowed out of our houses, are visitors to care homes. However, as Leaf is in the long-stay dementia unit at the hospital, not strictly speaking a care home, their powers-that-be can decide to shut the doors to outsiders, or let us in, as and when they wish. This weekend I’ve been ‘banned’ again.
As the lockdown is due to last at least until the end of November, possibly even for six weeks, it would be no surprise to me if they were to keep the dementia ward closed for as long as that. But I simply could not accept not seeing him for weeks on end, I know he would be miserable and likely deteriorate a lot without the comfort and stimulation of my visits. I think this confinement business is inhumane and, having heard the stories of people suffering dreadful loneliness shut away in their rooms, I can’t bear to think of my Leaf going through that. My plan B is in the background, just in case. It will not involve me in his care nearly as much. The main thing is that he’s okay in this period before he can have a room at St. J’s and heaven knows when that might be. If his welfare is severely threatened by the incarceration, then I will do something about it. I am not impotent and I am tenacious! And where love goes, goes strength of purpose.
As if this interim period isn’t difficult enough, I have developed a weird condition called Plantar Fasciitis – stabbing pains in the heel when getting up in the morning and standing up after sitting for a while. It takes time to wear off which makes me quite unsteady on my pins. Oh, the joys of aging!
On a disagreeable and very hurtful note, I had a horrid email from someone we know virtually accusing me of ditching Leaf. I was extremely upset and appalled that anyone could be so nasty. Everyone else has been hugely supportive. I know this person has problems of their own and can only imagine they needed someone to have a go at. The email arrived after midnight, so maybe they’d been ‘seeking solace’, nonetheless ….
There you have it. Oh, except the jolly little development with the car. After much investigation to find out the cause of an annoying banging/rattling noise, my dear neighbour Duncan looked underneath to discover the back axle is detached from the chassis on the driver’s side and hanging on by about half an inch on the other! It was a very nasty accident waiting to happen. My guardian angel was definitely on duty!
I’ve now borrowed a car from kind friends until I can find another one. There is one that would be ideal but various hurdles have to be overcome before it can be mine.
It’s been a busy Sunday and now the pile of paperwork is almost dealt with – phew! And once Leaf is in St. Joseph’s and I can visit easily, I have plans for things we can do together. It will be quality time with him that I haven’t had for ages. At home with all the usual domestic trivia to deal with it was difficult to sit down and give him my full attention for long. I’m looking forward to a new routine with the carers taking over the difficult stuff and us being able to enjoy each other’s company – even if I don’t understand much of what he’s saying. I only know that the mumbles of the moment are very colourful and numbers come up a lot. I’m not sure he has any idea what he’s talking about himself but he does like to ramble on and I try to give an appropriate answer when required. More often to not, he looks at me as though thoroughly bemused, just like me!
doodahtwo.home.blog 
Hello Sue,
Lock up is what I call it too. I’m so sorry to read that you have had so many more stresses and strains to bear. How absolutely awful that someone has accused you of abandoning Leaf. How far from the truth they are. I do hope that Leaf will be able to make the move to St Josephs in the near future and I totally get what you said about you then being able to dedicate quality time to him.
Never doubt that what you have done and are doing for Leaf has even been anything other than the very best you can do.
Lots of love, xxx
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Hi Adrienne, Once again , thanks so much for all your support.
I am hoping to leave for the hospital shortly but cannot raise the nurses to see whether the unit is open to visitors again. Very frustrating not to know from day to day, but there are millions worse off than us and I think of that whenever I need to be brought up with a jolt!
Lots of love back, xxx
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Hi Sue
Oh !What a lot has been going on in what seems such a short time !
I just can’t believe someone could send you a poisonous email accusing you of anything to do with your care of Leaf . Easy to say just forget it as it’s totally untrue but probably harder for you to do that .
I had to smile picturing the scene at the hospital when they denied you entree to visit Leaf ! Good for you and I’m so glad you were both finally allowed to be together for a small time.
Now in this new Confinement it must be very worrying for you not to be able to visit him so I am really feeling for you . Not sure what your plan B is but glad you have it !
Take care and see you soon hopefully xx
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Hello Gail, Yes, I’ve lost track of the days with all the stuff that has ‘taken over’. I will put that nasty email to the back of my mind and remember the word kharma! Hope I spelt it right.
As I said to Adrienne, am x-fingers I can visit today and I’m anxious to be able to taken him out into some fresh air. Being shut in for weeks is dreadful for the health as well as the spirit. We’ll see if I can persuade them.
Will be in contact re. walkies. xx
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Quality time is so important to everyone, let’s hope the authorities ease their visiting restrictions soon.
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Absolutely Jenny. I believe the lockdown is due to continue until at least the end of the month and could go beyond. Isn’t it time the ‘powers-that-be’ were forcefully challenged. These measures are wrecking the lives of so many people. If people feel vulnerable then they can isolate themselves and leave the rest of humanity to live their lives.
Anyway, I have just picked up a message to say that my visits to see Leaf have to be ‘programmed’. We’ll see what that adds up to. X-fingers that it’s feasible.
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Oh Sue how horrible for you to get such a nasty email. You could never be accused of ditching anyone! I guess some people have their own mental health problems too. I hope they at least allow you to see Leaf outside in this weather? You are very tenacious and it sounds like you need all your strength to battle with all the admin. So kind to hear of friends that help out with cars just what you needed and keeps your faith in people 😃 big virtual hugs xx
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Hello Trisha, Thank you for commenting, it’s good to hear from you.
I’m trying to dismiss that email and am sure the problem is that person’s situation.
In future my visits to see Leaf have to be timed. I’m waiting to hear back from the ‘psychologue’ who is apparently responsible for organising visitors. I suppose if they are prepared to do this, it must mean that they realise the importance of family keeping in touch with their loved ones inside. Inside being the problem a lot of the time. I have to get him out for a walk around, being incarcerated is really bad for the health, along with the rubbish food – very worrying for those of us who consider health a priority.
Big hugs back to you. How’s Jack? xx
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I’m so glad to hear in your latest post that you are getting some sleep and eating well Sue it really helps keep your strength up and having Monty around probably helps as well although I know sometimes animals are a bit of a bind! Jack is his usual ebullient self and I really hope one day we can go for a walk together again. Fingers crossed that Plan B comes together and is a good result for you both. Much love.
xx
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Hi Trisha, I am certainly getting lots of sleep!!! Monty is great company if rather clingy at the moment. Yes, I look forward to walking with you again. I imagine Jack is back up to good health now.
Plan B is almost in place but I have to wait as the hospital is closed again!!! Open, closed, open, closed and so it goes on. There are a couple of obstacles to be overcome but I hope to have them sorted before too long.
Aren’t we lucky with the weather! Love back to you xx
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Hi Sue, I’m appalled by your reference to someone who has criticised you. Time to name and shame. I will be very happy to put he or she very firmly in the picture.
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Oh Sue, what an absolutely horrible situation to be in, nothing I can say or offer except we’re very much thinking of you both and sending you love and hugs xxxx
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Hello Amanda, Thank you, it’s like being on a roller-coaster (or should I say switchback) emotionally as well as practically. If I get riled up enough, I will make sure my feelings are known. Having Leaf shut away is horrible. I just pray a place comes up at S. J’s soon and we can off on a better footing. Hope you are both well, love and hugs back, xx
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Hi Sue, I have been somewhat concerned at your last posts. I fairly certain that I had told you of my experiences with Lannemezan Dementia Wing with my mother. Some years ago she spent a week there in respite care when I went to UK on business. When I returned for her I found that she had been tied to a chair everyday. As a result, she had ulcers over her legs which need treating for several weeks. At that time she still recognized me and could still communicate so it was, therefore, a very upsetting experience for both of us.
Alzheimer’s is an awful condition for carers to deal with but also for the sufferer in the early years when they realise that something is happening to them.
Please try your utmost to get Leaf away from Lannemezan. Obviously the lockdown could go on for a long time and there might not be a room down the road for sometime. There could well be a suitable place in a home nearby eg Boulogne sur Geese where his needs could be met and you could see him each day with ease and others could possibly visit without the need for ‘red tape’. This option could be preferable than the current position you find yourselves.
I was lucky that I was able to keep my mother at home with plenty of support and I appreciate that so much. Hopefully the situation will be resolved satisfactorily for you both sooner rather than later.
Fortitude and courage springs to mind. Liz
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Hello Lizziekins, Good to hear from you!
I don’t remember you saying about your mother’s stay in Lannemezan. Was that recently? I’m horrified by what you told me. I’ve noted myself that things aren’t as I would wish, as I said in the blog. I’m concerned about several aspects of the care and am tackling them with the Assistante Sociale and the doctor at Lannemezan.
It seems to me the problem is partially to do with lack of sufficient staff and also that hospitals are clearly not places to stay even if only short-term.
I had already checked out all the care homes in the area and those with facilities for dementia are not admitting short-stay patients at the moment – there are only three in the area that have dementia units anyway. Had they been, I would have arranged respite care for the time being. However, I will talk to the Assistante Sociale in Masseube and see if she can come up with something. Failing that, I will have to pursue my plan B which could be fraught with problems, not least of which is the catheter.
It’s all pretty horrible and I only wish I hadn’t cracked up and could have carried on until a room had become available, but the stress of three totally disturbed nights on the trot and all the rest that had been going on, was too much. Matters were taken out of my hands. However, it’s too late to think about that now.
I said all along that I wanted to keep Leaf at home but we don’t have the money to employ sufficient help, it’s as simple as that. Also, he was becoming very difficult to cope with single-handed and all those who spent appreciable amounts of time with us were adamant that I couldn’t safely carry on.
As for Covid, the least said about that the better.
Thank you for caring.
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Hi Sue, well as my mother died about 5 years ago, it was probably 16 years ago or more! The culture is different. I had nothing but praise for Dr Bordes and his team …it was only the respite care in the hospital that horrified me, I hasten to add.
Like you I had Alison help me once a week on the Cheque d’emploi and another lady another day. As you know this assistance is provided by the state and it worked very well for us. My mother really looked forward to their visits and as with Leaf, Alison would take my mother to her house. It is so important that outside input and stimulus given to those with Alzheimer’s. Of course this gives the carer a break too.
I did not know you were only looking at short stay which from what you are saying is causing the problem. Could you circumvent this by looking at long stay and then take it from there?
My mother also had a catheter for long periods but it is managable. Hoping the suggestions and my experiences from the past helps. Liz
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Yes, it does help and thanks for your input, Liz. Sue
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Hallo Sue
I haven’t written for quite a while, as my darling Don was deteriorating so quickly and, as you know, the pressures just mount up. I was horrified to read about the treatment that Leaf has been subjected to recently. It made me cry as I could imagine Don being in the same situation.
Don passed away about a month ago, but I managed to keep him here at home, and there’s not many dementia patients who have the luxury of dying in their own bed.
He was bedridden for the last 5 weeks, and I managed with help from two nurses, one Spanish and one English, who I paid for. There’s not much help from the local Spanish Council, especially at the moment with the very many requests for help they are dealing with, due to Covid. Also I have lovely neighbours who would come in at the drop of a hat to help me move him or whatever I needed. Looking back, you wonder how you did it, but we love them and it doesn’t occur to you not to carry on. In the end it was a relief not only to Don but to me.
I am coping well, I think because I have been grieving over the last two years and crying most days, and of course I’ve been busy doing all the legal type stuff that has to be done.
It was such a shame that my poor son couldn’t get here to see his dad, as he couldn’t do the quarantine on his return, and neither could he get here for the funeral. In the UK they are in lockdown again, so he could have come now!!! Never mind we will have a memorial service at some time in the future.
I really hope that you get Leaf into a nicer place, you both deserve that. But you must keep on fighting for him, as I know you will.
Sending you much love Sue, and of course strength.
Margaret
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Dear Margaret,
I was so sorry to read you lost Don. How fantastic you managed to keep him at home.
I’m currently in the midst of setting up plan B as the situation at the hospital has become untenable. I will be writing about what I’m doing on the next blog.
Recently Leaf’s sister had to cancel her trip over from the UK to see him. He didn’t know she was scheduled to visit, which is just as well as he would’ve been very disappointed.
I know about the grieving process. With AD it’s drawn out over the years and I find my emotions have been all over the place, it’s very tiring and I have swollen eyes a lot of the time.
These Covid restrictions are inhumane. I would’ve thought that the UK policy makers could have learned from the last disastrous lock-downs. We can only conclude that they don’t give a damn about the consequences of their.
Thank for writing such a helpful, albeit very sad, comment. Love and strength back to you. xx
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