Update on Ken

[TinaT]

Many of you know that Ken has been on the Assessment/Long Stay ward at the local hospital for the past 5 months and I am desperate to get him moved to a lovely EMI nursing home. The Consultant in charge needs to assure herself that his behaviour can be managed by staff at the EMI home before she will sanction the move. With this in mind he has been attending a day care centre 2 days each week to be assessed for his interaction with other patients.

All went well the fist few visits. The day care centre is lovely - bright and airy. The staff are lovely - kind, caring and provide good quality activities. All seemed to be progressing and I was full of hope. I even thought he might be allowed to move to the EMI home perhaps just after Christmas.

I am now allowed to bring him out of hospital for a few hours twice a week to come home. He needs constant attention but it was good to have such quality time away from the busy, noisy and sometimes violent ward and we both coped very well with the 2 short home visits we have had together. I torture myself thinking that I should have him home for good, that I am his wife of 40 years and somehow I must find the strength and courage to do this but my head tells me that this would be an impossible situation and I could not cope. When he first went into hospital I pinned my hopes on a change of medication to alter his behaviour but now accept that he was and still is on the maximum he can be given. It was not so good taking him back to the ward, but he complied fairly well and the staff didn't report any unduely agitated behaviour. I also visit him every day and transport him to his day care centre, so all in all, I felt things were moving into a happier phase for both of us.

What a bump down to earth I have had this week. His last two visits to the day care centre have been pretty disasterous! Last Friday I was asked to collect him very early as he had become agitated and distressed and was looking for me. This behaviour is following an all too familiar pattern which I used to experience when looking after him before he went into hospital. On the car journey back to the ward he calmed down considerably, probably because he was back with me - his 'safety net'. Monday was even worse! He became more and more agitated during the morning and by lunchtime had thoroughly upset a lady patient by hallucinating that she was me. I'm not sure what he actually did to her but the staff said she was crying and upset. I was out shopping and could not be reached so two of the day care staff took him back to the ward. He is to be allowed to the day care centre again but if this behaviour is repeated he will not be able to continue to go there.

I ask myself am I visiting and seeing him so much that he cannot settle without me by his side? I didn't go yesterday and when I arrived on the ward today he clung to me desperately for the first few minutes. He also surprised me by telling me that I hadn't visited him for a long time. He normally can't remember what he has been doing 5 minutes previously so I was astonished that he knew I hadn't been the day before.

I asked the ward manager today if she thought I was visiting too often. She said that she felt I was doing too much - not for Ken's sake - but for my sake. She was concerned for me and my well being. We decided that I would not visit Tuesdays and Saturdays and she would monitor how he behaves on the days I'm not there. I am also going on a 4 day break in 10 days. I have no one who can visit him during those 4 days and am feeling pretty bad about leaving him.

Has anyone any advice please to help me in this turmoil? xx TinaT

 

[Grannie G]

Dear Tina,

I have no idea how this sort of situation can be managed. If you abandon Ken it might stop him seeing you in other women, but how can you abandon him.

If you continue to visit every day, you are encouraging his dependence on you, but how can you stop visiting when you know he is comforted by your being there.

Perhaps you could visit on alternate days, I don`t know if it will ease your stress or add to it.

I wouldn`t read too much in him telling you you hadn`t visited for a long time, when you missed a day. It could just be a coincidence that it felt like a long time to Ken. But thre again, you know your husband better than I do, so you might be right.

It will be interesting to see how he is during and after your 4 day break. I hope you will be able to enjoy it, without worrying too much. Perhaps you could visit on alternate days until you go away, to help him get used to being without you.

I`m sorry I`m not helping much. I can understand how upsetting it is for you, but honestly can`t think of a way out.

Hopefully someone else might know better.

Love xx

 

[Margarita]

I ask myself am I visiting and seeing him so much that he cannot settle without me by his side?

I would say its not you its part of the disease like a no win situation another change something new you just have to learn to live with change, in the progression of the disease if you don't mind me saying


you could perceive the 4 days away as a respite for yourself not that your leaving him . I can only imagine how emotional hard that be on you

She was concerned for me and my well being.

I can also see her point of view , give it a go visiting every other day only time will tell
think of the worse and hope for the best has always help me through the hard time with this disease .

wishing you all the best

 

[Taffy]

Dear Tina, I am sorry about the day centre and hope Ken is settled on his next visit. I hope you can get Ken to the EMI n/h soon. I think it's a good idea having a break on Tuesdays and Saturdays and hope this works out well for you. I know how difficult leaving Ken will be for you but I'm sure the four days break will be very beneficial to you. Other circumstances could of dictated you being unable to visit so try to enjoy your time away. I am sure that ken would also of wanted this for you before this illness. I hope that you can enjoy yourself. Taffy.

 

[Margaret W]

Dear Tina,

I am sorry to hear about your situation, it must be very hard for you.

I think visiting every day is not a good idea. I know you want to, but suppose you are ill and suddenly he doesn't get a visit, suppose you have a hospital appointment yourself, or just want a day to yourself (which you will need now and again). It would be distressing to him if this had never happened, and kinder if it did happen occasionally. I wouldn't even suggest going every other day. I would suggest NOT having a pattern at all. Go Monday, Tuesday, miss Wednesday, go Thursday, Friday, miss Saturday. Another week, go three days in a row and miss two days - tell him you are having some nasty dental treatment and are not sure how you will be on the following day. Occasionally miss three days, and perhaps telephone him on the middle day, or leave a note for him to read. Make it different evey week.

I've got into the habit of visiting Mum twice a week, sometimes three (this week four), but it has always included either Saturday or Sunday. She knows it is Saturday or Sunday, cos he Activities Co-ordinator does not work on those days. But last Saturday, just as I was about to set off, our elderly cat collapsed on the floor. My husband is squeamish about such things, so it was down to me to determine that the cat had passed away. My husband rang the vet. The vet wanted to see the cat cos she had a worry that a sudden death might be due to poisoning, and we have two other cats. So my husband took him down. I knew he would be a wreck when he returned, so I had a fresh cup of coffee waiting, and was ready to hear his distress, which I knew he would have. We also had to tell our daughter, whose cat it was, and she was naturally upset (she lives 200 miles away). So Saturday disappeared. I hadn't specifically told mum I would visit at the weekend, and on Sunday I was so busy I didn't visit either. On Tuesday she told me she had been "worried sick that I was ill" (mind you, mum has always worried sick if I have a cold), and I said if I was ill I would ring the home and get them to tell her. That reassured her. In retrospect, it did good to have a hiccup in the routine, she will be less worried if it happens again.

I would really advocate being more flexible so that he doesn't get too upset if you are not there. This, of course, is only my experience with my mum, who before her illness I only saw once a week, it is totally different with a husband whom you spent your entire week with.

Suppose you were hospitalised yourself, or got the flu, say for a week. It would be much easier on him if he were used to you not visiting regularly.

It might seem a bit cruel to not visit when you are perfectly capable of doing so, and you want to visit yourself, but it is better if you do have a less regular pattern.

I hope this doesn't sound too harsh, I am just trying to help you both.

Much love

Margaret

 

[Skye]

Dear Tina

I can understand your turmoil. This visiting is so stressful, and yet we can't bear not to do it.

Margaret, I'm sure your advice is good, but you are forgetting that it is Tina's husband we are talking about here. It's a huge wrench to admit that we can no longer care for our spouses full-time, and the daily visit is as necessary for us as for them, painful as it may be.

At the moment I can't bear not to see John at least once every day, twice if he is ill. I know the time may come when I'll cut this down, even think of a holiday, but that time is not yet. It's all too new for me.

Tina, you know Ken will be cared for if you don't visit. The staff have advised you to cut down, and all you can do is give it a try. If Ken does not know you visit every day, he won't know if you miss the odd day. Give it a try, and see how it goes. Hopefully, Ken won't realise, and you'll be able to enjoy your break away without worry.

You're doing everything you can for Ken. You deserve, and need, a break.

Love,

 

[TinaT]

Thank you all so much. Your understanding and support helps a lot. I didn't go to visit Ken yesterday but kept myself busy and so the day passed by. I picked him up at 10.am this morning and took him home. I cut his har, nails, shaved and trimmed his beard and then put him in the whirlpool bath which he loved. It was so wonderful to see the happiness on his face. He looked so relaxed and handsome, well dressed and cared for. We had a few hours of wonderful peace and contentment together. Then the agitation, upset and dementia returned in full force and I was oh so suddenly faced with the old reality and the task of driving him back to the ward in one piece.

Still, I had a most treasured few hours with my husband today.

 

[connie]

Tina dear, so glad you had a good day, despite the ending.

It seems as if you are going to have to 'trial and error' visit for a while, as no two days seem to be alike for you both at present.

Quoted by Tina:

Still, I had a most treasured few hours with my husband today.

Hang on to that memory, sounds a wonderful time.

 

[Grannie G]

We had a few hours of wonderful peace and contentment together. .

Dear Tina,
That is something very special. The agitation, upset and dementia are par for the course, but at least you had something to treasure.
Love xx

 

[Skye]

Oh Tina, I'm so glad you had those lovely few hours together. A memory you will always treasure.

I hope you both have more days like today.

Love,