General Chat

The charge nurse has told me a few times what they are doing re drugs and yesterday I was told that they are trying to cut back on them. They cant cut them out straight away, have to reduce them gradually, but I cant see it restoring him to the person he was before he went in there. The nurse who has been his primary helper said that she had argued with the doctors each morning about his medication. He used to play his harmonica to her and sing and dance with her (he has never danced with me!).
Apparently he has been hitting people and that is not like him at all. I pray all day long that he will die soon since I know he will never get better. It is no life for him being cooped up even if he isnt on any medication.

Better go, got to dry out the keyboard.

Huia.

Hi Huia

Thanks for having the courage to share with we others your pain and grief. It does pay to discuss with the doctors your concerns about medication. When BH was having her turns on a regular basis back in June, one BP pill was dropped and the dosage of the other was changed twice. I even questioned the need for continuing the exelon which was supposed to delay the onset of alzheimers. When cognitive skills, to a large extent, have long since gone, you wonder whether this expensive medication is having any effect at all.
So the tendency is to continue just in case further degeneration is precipitated.
I had heard that in care, it was not uncommon for medication to be stopped. My lay feeling was that when the time came for BH to go into care, the deterioration compared with being at home could be fairly rapid. But that is not based on any experience just gut instinct of what the change of environment may have on a person.
Of course we do not know when this severe deterioration is going manifest and it could easily have occurred at home and placing in care would have still occurred and been essential for your well-being as well as managing Phil with as much skill and support as can be administered by all involved.
Praying and having a good cry over the situation over which you no longer have much control is good for it shows that your heart is still warm with the love of all those years together. I recall the text "Greater love hath no person than this, that a person lays down their life for their friend". Huia, you have done exactly this in the spirit of the words.
Very best wishes

Thank you Bob. (*Gets busy mopping up the keyboard yet again*).

A social worker phoned this morning asking if she could come to see me. While I was waiting for her to arrive the hospital phoned to say they wanted to have a family conference on Friday. When the S.W. came she said the Charge Nurse had asked her to visit me. I think the C.N. was worried because I had been in tears and said it was very depressing. But I am not going to do anything silly, not while I have so many friends on GR.

Our son is going to come up from Rotorua on Friday for the conference. I think it is to explain about the medication and discuss the future. Our daughter is also going to see if she can get somebody to cover for her in her job. Phils niece is going to see if her mother wants to come too.

Bob, I hope things go differently for you and your BH. It is such a hard road to travel. I think it is worse than terminal cancer. At least with that the patient understands what is happening but with alzheimers they dont understand and think they can do all sorts of things. It is no good explaining, they just dont understand.

I will be off to bed soon, didnt get enough sleep last night.

Huia.

Don't know about you reaching for the tissues, Huia......I'm certainly welling up!

Thank you for sharing your thoughts, and being able to express those which many of have had, and perhaps still do.

Bob's reply was so touching. Another quote could also be applicable

*God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference. *

I've said numerous times to my OH that perhaps I shouldn't have done this or that regarding my father - his answer could also apply to you.

*You did what had to be done, and even though he didn't appreciate it at the time, it was the only way, and best in the long run for his well being*

With best wishes

DET
XX

It's not really your Phil anymore is it? He kind of slipped away quietly some time ago leaving you lots of happy memories and a man who used to be your Phil.

You would hope that while little else remains his happy memories might be lingering too.Then they will be the last things you share.

Wouldn't it be wonderful if you were both having the same happy memory at the same time.

Thank you DET and Sharron. As for reaching for the tissues, I have told a lot of people that they have me to thank for the fact that the forestry and tissue making and panadol making industries are thriving this year.

I dont think our daughter is very keen on seeing her dad again, she would rather remember him as he was but I hope she can at least be at the conference to find out what is what. I often regret that I couldnt visit my dad when he was in hospital with leukaemia, but I was having repeated attacks of tonsilitis and my doc thought I should stay away so I didnt spread the bugs through the hospital.

Huia.

Hi Huia

I have been thinking about your present scenario and whether a possible future for mine will be similar. Then I remembered the following:-

"Yesterday has gone, tomorrow is yet to be, today is the miracle!"

Now there probably did not seem any of those for you today, neither did there seem any for me, but in my case maybe I was thinking too much about those tomorrows. I was told recently of the death of a man whose cognitive ability was enough to know that stopping eating would achieve the result he desired and it did. I have also been told that some in secure care have good life expectations for they are continually walking in their environment and are quite fit as a result.
It made me wonder whether for some, this sort of care is like a hospice and quite different for others. In a way it is like a cameo of life in the outside world, some struggling to cope with life in so many ways and many of we others just getting older but reasonably fit enough to occasionally still perceive "the miracle of today". I suppose a little philosophising, or better perhaps, reflection, in a quiet moment does no harm.

Hope you get a good night's sleep.

PS
If it seems garbled it was because I was bidding online at the same time for a replacement car. I was outbid so that may have been my miracle for today - saving all that money!!

Dear Huia, how sad I am for you and Phil, it's so wrong that an active person has had to have his lifestyle curtailed for his own safety and your sanity and I can understand your pain as you see the man you love so changed. I do hope the case conference can show up ways to make things better either by changes in medication or finding somewhere else for Phil to stay where he can get more stimulation and exercise which might bring back a little strength in his legs etc. perhaps. You should not feel guilty in any way, you did all you could for Phil for so long and I could tell how tired and ill you were becoming, so much so that you might both have been in danger due to Phil wandering when you were trying to sleep, had you not been able to get him cared for at the hospital, where I assume he is still living, or have I missed something and he is in a care home now.

I feel bad that I have not been on these threads since I got back and am glad Bob and others have been there to talk with you. Bob, what a star you are, so understanding and also keeping us involved with your own trials and tribulations, with never a moan or complaint, just droll humour sometimes, as you make the best of things. I hope your health improves and your luck gets better too, you carers are all such amazing people.

Take care, I am thinking of you all with great admiration. I am so thankful my own parents did not suffer the slow passing with alzheimers and altho my Dad had cancer, it was not a long illness, less than a year and he bore it with fortitude and dignity. Mum coped for several years with heart disease, she had three heart attacks and a slight stroke from which she fully recovered and she lived as well as possible with the diabetes that struck after her first heart attack and managed to get out a bit and stay in touch with her friends and family to the end.

Hugs for you all
Lizxxxx

We had myself, son, daughter, granddaughter (adult), Phils sister and her daughter at the conference with a doc and the charge nurse. They explained that they have tried him on various medications at various levels. There is the choice of reducing the meds so he is not so bleary or keeping them going so he is not hitting people, and apparently he has hit some quite hard - not like him at all. Though I think the doc said they have now taken him off the meds. Certainly he didnt look so bleary today. A nurse was feeding him when we arrived. We didnt go over to him, but his sister and niece went to see him after the conference.

It was suggested we look at a couple of rest homes which have hospital/dementia facilities. One was stressed as having very good care, so Peter and I went to look at it and we thought it was fine. Of course we both hope he might not last long enough to be transferred there, as the move might upset him again. We got the impression we were being told that he could be 'on the way out.' That would be far the best thing from his point of view. Not that he has a 'point of view' these days, but you know what I mean. If he knew what was happening to him he wouldnt want to go on. I certainly feel much better today, I dont know if it was the conference, or just having Peter here for company - he even took me to lunch at 3.30 on the way home, despite the fact that I had had an early lunch at 10.15 because of the conference being at 12.30. Peter is staying the night and will do one or two small jobs in the morning. He has already cleaned the weeds from one of our roof gutters.

I will be hitting the hay soon, I have had a tiring day.

Love to you all.

Huia.

Glad your son was able to be with you at the meeting and to stay with you for a few hours. Gives you more of a feeling that you are not alone in your grief. I understand what you are saying, that you hope Phil does not last much longer. I agree with you, Altzheimers is one of the rare occasions when I would agree with euthanasia, though even then I would not like to have to make the decision.

I hope the conference has helped you a little Huia, and with the support you had so everyone heard the same information you are not having to remember it all to pass on as anything you might temporarily forget, someone else from your family and Phil's family will have heard too. I do hope if it comes to a move, you can get him to the home you prefer and things work out without too much disruption for Phil. Nice that Peter stayed over and did a few things for you and mostly, gave you company with your lunch and was there as you mulled over the events of the day.
Have been wondering how you got on and hope you will rest a little more easily now while things get sorted out for you all.
Special thoughts for Phil and for you,

love
Lizxx

I called my elderly relative's family today and it seems certain now that she will never go back to the house she recently had decorated and new heating in, but will have to go to a nursing home. She is becoming frailer and as nothing can be done for her knee she cannot move about on her own so will have to have lots of care, which can't be provided in her home. She has had an infection, a reaction to the antibiotics and developed cellulitis in her arm after some treatment so is really going through the mill, bless her. It is so sad, we used to enjoy our chats by phone and she would tell me anecdotes and info on the family history, now it will be difficult to talk with her by phone. I will have to try hard to get to Banbury area to visit her, but must do it before it is too late. Her d.i.l. was full of moans and groans about an extension they are having on the house, shame they can't do it to accommodate the old lady but they don't sound as if they have ever done enough for her. She was complaining she hasn't much time to clear the house, so I have asked her to make sure she hangs onto any paperwork about the family rather than just sling it out. Bet they will be there quick enough when there is some cash to be had.

Lizx

Sorry about your elderly relative, Liz.

My son did more than 'a few small jobs' today. He cut the very long grass at the bottom part of our property with one of those line trimmer/weed eater things, then he mowed it and mowed the lawns around the house. We also pulled up the wire netting that Phil had put around several small vege gardens. Not easy as the grass was growing up through the netting. At least it is a bit tidier now. I just hope my odd job man can keep things that way in case I have to sell.

I ran out of eyedrops this morning and had to go into town to get more. My eyes have been sore and Peter commented that they were a bit bloodshot. I will make an appointment to see the specialist as soon as I can to see if it is anything to worry about. Maybe it is just hayfever (says she hopefully).

Huia.

The sore, bloodshot eyes got worse over the weekend, so went to the doc Monday morning. It is conjuctivitis.

Phil will be moved into a private hospital tomorrow or Friday.

Huia.

Still keeping you both in my thoughts Huia.

Hope the eyes are getting better with medication.

I think Phil will be more settled once he is in a residential home.

Take care of yourself as always.

Linda :o) XxX

Huia, you really are run down! Try a course of multivitamins for a few months.

Hope Phil is happier in the new place.

DET - also currently suffering from conjunctivitus!!!! Hope you feel better soon
XX

I have just received the phone call to say that Phil has been shifted to the private hospital. I wont be visiting for a few days as I still seem to have a virus that is going the rounds. After breakfast I lay on the settee and slept soundly for almost 4 hours, despite a reasonable nights sleep. My eyes are still a bit red and itchy and my throat is not right yet.

I must make an appointment to see the woman at WINZ (work and income NZ) to sort out our finances. They will be taking his super and putting me onto a living alone allowance and subsidising the hospital.

Huia.

Hi Huia, I hope Phil settles down ok and you get the finances sorted out easily. Hope you end up with enough to live comfortably and to do what you want regarding driving to your choir meetings and such, would hate to see you have to hold back from getting out to see people and visit Phil.

You are probably best not visiting him till he is settled in anyway so make the most of the chance to get a bit of rest. I hope your eyes and throat are better soon. I had a sore eyelid for a couple of days and then yesterday it came to a head like a stye which I bathed in hot water. Went to the pharmacist to see if I needed to use ointment or something but she said no, just keep bathing it and it should clear up on it's own, but now it seems much more sore and the other eye doesn't feel 100% so I thought a while ago, maybe I have conjunctivitis! Now Huia, I know you thought I had passed something on to you the other day but I am surprised how fast the conjunctivitis might have spread back to me! lol

Let's hope you, DET and I can soon see more clearly again.

Take care, must get to bed in a bit, have been watching my two smaller hedgehogs feeding again and time flew by, they were so funny as they snuffled away, one kept butting his head at the other one to deter him from eating the best bits of catfood etc.

Love and hugs to all you carers O.h. has a fasting test this morning to see what his blood sugar levels are like, were a bit high before we went away. I am so hoping he is not diabetic as I know he won't stick to the rules!

Lizxx

My friends husband has been diabetic for many years and he doesnt follow the rules as he should. She has had to call for an ambulance several times. She told me recently that he hits her when he is getting an attack and his doc thinks he has had some mini strokes. I just hope she keeps herself safe.

I have been googling organ donations. I was surprised to see that kidneys and liver and skin are acceptable at all ages and corneas up to the age of 85 (though Phil would have only one that might be accepted if he doesnt have a cataract in it which I think he might). I had hoped bone donations would also be acceptable but there is no mention of that. The Auckland Medical School has a brain bank so I hope they will take Phils brain for research or for students to practice on. I know he would appreciate it, we were down as organ donors on our driving licences.

Huia.