General Chat

Jean (Monmouth), the best of luck to you. My OH seems to be losing weight as his belt needs another hole in it now. He eats as much as I do, possibly more, but I am not going to worry about his weight at his age (79) with his alzheimers getting worse. I am told when the brain cells disappear he will forget to breathe. I will not be doing any for him. It will be a big relief for me when he does die, not that I really want him to die, but he gets so frustrated when he forgets things or does silly things. I take him for a walk and within an hour or less he has forgotten. No real quality in his life and mine has been less than perfect.

Huia.

After writing to the diabetic specialist last week, we have had an appointment sent for next week which is 6 weeks sooner than expected.
I desperately want to see the man about my OH's condition. With this autonomic neuropathy he has he is not getting enough nourishment and is beginning to suffer from malnutrition, and I am at my wits end trying to deal with it. He is 6ft 2 and only weighs 11stone 10.

I was having a nap on the sofa after lunch today when I heard a voice. I thought we might have visitors so I leapt up and found it was just OH on the phone talking to our son. I think I might have to 'pull the plug' on the phone at night just in case he decides to ring anybody when he gets up at 3am or whatever time. There was one night when I slept in the spare room and he thought I was at a concert and was watching out the window for our vehicle to come up the road. He was getting concerned, so was very relieved when I emerged from the bedroom. He said he couldnt remember the name of the choir lady to phone her. I dont think she would have appreciated being rung in the wee small hours.

Huia.

Hi Huia

I agree entirely with Det's comments about your own health. As an illustration we were thinking of having a trip to the UK in 2005 and we consulted a specialist to check the wisdom of it. He said that there would be absolutely no problems for BH in the UK she would be well looked after in an emergency. He was more concerned about how I would cope. It was on his and our doctor's recommendation that we did not go.
Care teams invariably stress that the health of the caregiver is of paramount importance to ensure that there is continuity for the person to whom care is given.

Hope you can work something out, Huia. Your health is as important as OH’s. Even if you don’t use it at the moment, at least you will have all the details at your finger tips. The Day Care centre may know of other organisations or approved independents.

I looked at their website: www.carecompany.co.nz. It looks as if they will stay in the home while I go away, although they might not like coming out here in the countryside. Their phone number is for Pukekohe which is about 33 km away from here. I would want somebody who could walk with my OH. Of course he wont want a stranger here, but that cant be helped. He will probably be up half the night looking for me and looking out the window to see if I am coming up the road. But it will be up to the carer to reassure him. I might get my daughter to ring them up and ask a few questions.

Huia.

In a local newspaper which came today there is an article about a Care Company. I am not sure if they provide somebody to stay over while I go away but I will certainly be asking questions. Been out today, OH had a brain scan at the hospital. I dont know if they found anything! I am tired so will be going to bed in a few mins, even though it is just after 9pm, but then OH has already gone.

Huia.

Hi Huia

Well done for arranging the day care. I hope everything works out. Bob's previous advice about handing him over to one of the staff and walking away is good. They are very experienced at providing distrations.

I couldn't persude my mother to get out of the car once ( I'd taken her to visit my father in hospital and had a 60 mile drive back to my own home). The carer came out, told her they had saved her a piece of cake, and she was off like a shot!

If it's any consulation, it seems that a mysterious 'other person' is not unusual. It's as if their memory has duplicated itself so that they remember the 'you' in front of them, and the 'you' who is trying to get some sleep without quite making the connection.

Another thought. Is there a dementia support group you could drop in to while OH is at Day Care, or a phone help line manned by volunteers when you need to talk to someone NOW when you are at the end of your tether? Perhaps the Day Care people know of something suitable?

Hi, Claire. I am glad I didnt have problems when my children were young, although I probably could have coped a bit better with the sleep shortage then, but not now. Best of luck to you.

Huia.

I have finally arranged to drop my husband off at the day care place next Wednesday, will see how it goes. I will probably go somewhere quiet and try to get some sleep.
I also tried to get an appointment with my preferred doc but no vacant appointments for tomorrow (would have to be late afternoon as OH has a CT scan at hospital at 11) and doc will be away next week. I asked if I could have a repeat prescription for my sleeping tabs without seeing him and was told I could. That rather surprised me, but at least it might help me get over the next few days. Now I just have to phone sis-in-law to see if she would like to stay with OH for one or 2 nights (plus days) some time soon. See how it goes with her here while I go away. If all goes well I could go away longer another time.

Huia.

Thanks for that Bob. I was just dozing off just after 11 tonight when my hubby got up and was trying to open the window. I dont know if he thought it was the door. I turned on the light so he could see. He then went to the bathroom and then headed out into the lounge where he wrapped a blanket round his knees (was wearing shirt & sweatshirt) and sat on the settee to sleep. I found his torch (downstairs in the garage) so I could turn out the light but he could still find his way around. But I couldnt sleep when I got back to bed so I am sitting here with the lights on and he has just had breakfast. He got out 3 plates, the other 2 were for me and 'the other person'. He often thinks there is another person here. He had washed the dishes and is drying them now so that means I wont be able to find anything in the morning. Which makes 2 of us that wont be able to find anything.
If he doesnt go back to bed soon I will take a sleeping pill and hope I can get some sleep. I will have to make enquiries about those under-the-mat sensors. But I dont think it would be a good idea beside the bed as, being a man, he often wants to go to the loo in the night!
Huia.

Huia
A few years back had a ring from BH at Smith & Caughey in the city, asking me to pick her up. Fortunately she knew our phone number then. She told me a kind bus driver had let her ride for free. Another time I was phoned while I was searching Newmarket letting me know where she was. When on holiday down south I had a deadbolt put on the door which has solved the problem and she does not know how to use the key even though it is in container nearby. The care facility has a key pad system to ensure that no one leaves.
Once at the supermarket she did not come in with me but had gone when I returned. I went straight to the police station and let them know and then cruised around to find her. Had a call a little later and the police insisted on bringing her back to the supermarket. In 2002 when in Nottingham she wanted to do some shopping and left the archive centre where we had been doing some family searching. She phoned from the police station and they kindly delivered her back to the centre.
At one of the secure centres we have visited they showed us a sensor that goes under the mat beside the bed so that the caregiver is aware of movement in the night. Could be useful.
Tonight I was told to stop snoring while we were watching the news tonight but an early morning start (awake 5.45) and 18 holes of golf tend to be the reasons for that.
My verbosity is rearing its ugly head again!

Claire, you have my sympathy over the early mornings. At my age I certainly need my beauty sleep. Unfortunately my OH grabs his throughout the day, then at night he sleeps until about 3 then gets up, makes himself a cuppa (and sometimes brings me one which is not appreciated) and also makes toast for his breakfast. I dont know what he does with the next few hours. On one occasion I came out to the lounge and found him lying on the settee with a blanket over him and a pillow. I just have to leave him to it and hope he doesnt go outside while I get some sleep. I really must sort out some motion detectors to put round the exits to the house at night.

Huia.

Hi Bob.

Here in Counties-Manukau I was told the 28 day respite care involved me finding somebody to come and stay with my husband while I go away for a break. Not easy. He loves walking so it needs to be somebody who can walk with him. I think his sister is probably the best bet. She did offer to take care of him if I needed a break. I will be asking her soon if she can come for one or two nights to see how it goes having her here. He did stay with her for 4 nights in Feb while I was practicing and singing in the Starlight Symphony, but he got very confused at times. On the other hand, he gets very confused at home at times.

Huia.

Susan
I was surprised to find such a thread on GR. It has been good for me to be able to share with others who are also current caregivers. I am sure that all would appreciate any sharing that you may do from your own experience.

Sigh!

I wish you were all about when I was a carer.....it was a lonely life at the time :-(

Hi Huia

Having visited two groups I was not keen in leaving BH at those particular day care groups. Whilst not taking away anything of the good work done at these, from my point of view, I was not that in that much need of respite and would have felt uneasy. The care team later suggested that we visit a different one. We did this with our daughter having morning tea with the group and as there was a vacancy said that we would be back the following week. Since then the days have gone to three ( I had been told that five days had been assessed) and that has been absolutley fantastic for us both. Sometimes if I am a little early for the pick-up at 3.00 I am chided for being too early. The name of the group is remembered as is the leader's name so both become iconic language for "good things" in the day. We have not used the other type of respite where BH would go into a home for two weeks and return home for eight. I did not feel as though I needed a holiday like that as long as I got my two half days at golf.
On that subject have just returned home having had an 81, so not too bad for an old guy.
I do not discuss the matter of where we are going in the day. We just get into the car and go there, give her a kiss and walk away leaving BH with the care giver without any misgivings at all. In the unlikely event of any unwillingness this aspect is left for the experience of the caregiver to resolve.

In one way, that's good news Huia.

Please take it.

Although you are coping admirably, you do need a regular break to recharge your batteries.

XX

DET, the lady from the Health Board seemed very reluctant for me to have day care, even though the doctor from the same Board had told me to enroll. She wanted it to come out of the 28 day respite care. It wasnt until I burst into tears and hung up that she said (when I phoned back) that she would authorise it for me. Not that I have used it yet, but it is looking as if I will have to start, perhaps one day a week initially to get OH used to the idea, then extend it to 2 days. I can use it to do my shopping unhindered or park up somewhere for a snooze (we live about 35 min drive from the place).

Off to town this morning to see the eye specialist.

Huia.

Poor Huia. It sounds as if it is time for either OH to have a sleeping tablet, or you to have a oouple of days respite care. At least it sounds as if he has recognised it is still night, and has tried to let you carry on sleeping.

I can't remember if you have covered this.....are there day care facilites which OH can attend once or twice a week, just to give you time to catch up with sleep or other chores?