And so it goes on...

[Mudgee Joy]

I had to leave that text quickly as I could hear my husband coughing loudly - but not from the bedroom where he should be - it was from a couch in the next room.
I can’t move him . He has lost his way from the bathroom - turned right instead of left !
It will be a long night
MJ

 

[Grahamstown]

Oh @Mudgee Joy it’s a horrible rollercoaster and I hope you have managed to get through without too much distress. My man doesn’t have a urine infection on examination but the episode on Sunday has consolidated into a new lower level of functioning although he is getting up, getting dressed for much shorter periods of time. I had to get him up to go to the dentist yesterday and I allowed 2 hours to get up, dressed, breakfasted, brushing teeth and getting over. I only just managed it amid great confusion about why where and what we were doing and of course on return it was into bed and fast asleep. The dentist could see the physical and mental deterioration in the six months since the last checkup and he may need the hygienist now. There was a deterioration in his mouth which he used to be better than me in keeping clean. So I think it’s the progressive nature of the disease which has suddenly gone down another notch.

 

[Mudgee Joy]

All the best Grahamstown- I take my husband for regular dental cleans now - the dentist went to great lengths explaining the best electric toothbrush - I went and bought one -used it for a few days !! Not to worry - but teeth, nails , hair, shaving ...all such a chore now - we have 4 or 5 electric shavers - hairdresser is a good day trip ..my husband likes about 14 hours sleep a day - just keeping him up now !! We haven’t had dinner yet and he wants to go to bed !! .

 

[Grahamstown]

I could say Snap! How very similar our dear husbands are as we have commented before. Yesterday turned out better after he finally got up at 12.45. I managed to get him out for a walk, then more rest and when he went off to bed at 7 I waited for his first coming down to say goodnight and pounced. I gently took him back and said I thought he could have a shower now and he had one like a lamb, no arguments and then he went to watch his TV in bed, what a blessing that has been. I only managed to get two meals into him though, and his teeth are perfectly alright for chewing which he is finding difficult. According to the UTAS course, areas of the brain which control appetite are affected leading to ‘starvation’ mode as the person doesn’t want to eat which accounts for the fat and muscle loss so characteristic of later dementia and certainly of my husband.

I am now doing the Preventing Dementia MOOC course and finding it quite distressing because he has virtually none of the risk factors which I certainly do. Every module is like a hammer blow as they outline what you should or should not do, and I scream internally, but he did and look what good it did, delayed the onset at best. He followed all the healthy lifestyle guidelines but in my opinion nothing can prevent dementia if the conditions in the brain are there. What triggers Alzheimer’s is still completely unknown although I can see that Vascular Dementia can be modified by lifestyle changes. All I can say is that I could develop either according to current thinking! At the moment all we can do is understand that we cannot control everything in life but must ride with the blows.

 

[Mudgee Joy]

Two things Grahamstown
One - can you set up a day bed near the garden - cushions blanket etc - maybe he could rest within sight and then be tempted to join in
!?!
Second - I am on a “maintain the brain “ diet - it’s exercise too - it originates from dementia Australia - I can give you the outline . It is a bit of a shock in some ways - cheers mud joy xx

 

[Grahamstown]

I have had a good run of keeping patient and calm but I have had just had a couple of evenings of extreme exasperation. He just keeps getting deeper and deeper into his world, not even wanting to go out now so using very little energy and conversation, such as it is, almost nil. I think that this may account for his evening behaviour, trying to make a connection with me of some sort. I have tried everything but sundowning is defeating for me. Back to trying again from the beginning. The day bed idea is a good one @Mudgee Joy which I have tried and will again but defeated by his fixation on his bed which has become his sanctuary, he is like a homing pigeon. From his point of view the only thing missing is that I am not there, but that’s pushing me too far at this stage because I can see deterioration month by month with more problems for me to deal with. Must try harder!

On the upside, which may be connected to the behaviour, I have been out quite a bit, twice over the weekend when my son came and all afternoon to the cinema with a friend on Monday when I organised lunchtime and teatime visits to keep him company. His extreme dependence must have been given a jolt, hence his evening wanderings to check back with me. We went to see the ballet Romeo and Juliet performed by the Royal Ballet and the balcony scene had me in bits as a reminder of the power of young love and our own youthful romance now in ashes. I am sure many of you will know what I mean. It was cathartic to be reminded and move on, a bit.

I am always worried about how everyone here is these days. Groundhog Day I suppose

 

[Grahamstown]

I have finally decided that it’s no good attempting to try and get him to have some sort of normality in the evenings, which has resulted in much less stress and anger for me. He is now behaving like an invalid which I suppose he nearly is. So trying to get a person with dementia to stop their obsessive fixated behaviour is a waste of time but seriously disturbing for the person looking after them.

 

[Mudgee Joy]

Yes you have to turn around and go with it!

My husband has swallowing problems and finally can’t keep anything down - after much pleading from me, the doctor paid a home visit and was convinced that something must be done fast - norm lost a kilo overnight ! And 5 kilos in past 10 days - he is fading - the doctor who was supposed to do the op is OS.
I know there will be delirium repercussions- but ready to accept that.
He is also sleeping heaps (14 hours last night in bed) but that’s natural with his weight loss - so I’m on a knife edge waiting and keeping my cool as much as possible!!
Love to you - perhaps can you check your husbands weight !? Perhaps a bit of medical attention might catch his attention more -x
Hope you are having lovely weather . The outings sound superb !!
Love MJ xx

 

[Grahamstown]

He is also sleeping heaps (14 hours last night in bed) but that’s natural with his weight loss

Oh my goodness it’s the same here. Lengthy periods in bed, small appetite, weight loss, as his whole being is eaten up by the disease. No desire to go anywhere or do anything. He is not as severely affected as your husband so my heart goes out to you as you struggle to keep him well. We are between a rock and a hard place trying to minimise suffering while keeping up nutrition, but I stick to my palliative approach. Actually I dread having to have any medical intervention, we have plenty of examples of the adverse effects of this on TP when it is necessary. I haven’t weighed him recently because I dare not. What purpose would it serve? He can’t eat more than he does, can’t be more active than he is because this disease is progressive and terminal, sometimes hard to believe as it goes on and on.

 

[AliceA]

I support you in your approach, it is a tough line but is probably kinder. Many people do not understand.
I use similar techniques.
We had to be up at a certain time, I massaged his feet until he woke up. Yesterday he slept nearly all day.

Next week we go away this change even though wanted has had an impact. He keeps looking for things in unlikely places. He remembers our travelling days.
Sometimes I feel we work too hard to achieve the impossible, not helped by the expectations of others. There was a family event, our absence was noted and our daughter had to fend off the simplistic advice! Mum has tried that, does that, that's does not work! Xxx

 

[Grahamstown]

How this disease catches you on the hop! Up and dressed, curtains open, lying on his bed at 8am when I go down today. He looks pretty dishevelled though, hasn’t shaved or combed his hair. At least he has his breakfast at breakfast time although my quiet breakfast is quite disturbed. Sigh, what will today bring?

Two hours later and he is back in bed after telling me about all the things he does in his retirement!

 

[Grahamstown]

to fend off the simplistic advice

This has been the bane of my life! However most of our true friends are now beginning to realise and if anyone says it to me I am armed with information from the two courses to counter misinformation. There are a lot of ‘experts’ around who trot out a reasonable amount of it, the most common being on all the things they do to prevent getting it. Good luck with that! On the other hand so many people are or have experienced it with a family member that they are very understanding.

 

[AliceA]

True. Just sitting before tackling sorting out packing. I really wish I had arranged this for one! Still I feel we are snatching a window of opportunity that may not return.

It seemed touch and go this morning. 'Not that bothered" is the latest attitude. He reckoned other people were late so it did not matter if he was! Quite out of previous character.

I will try and do second course in the autumn, I aborted because of my own health issues.
If this break is successful, I will try and get one in the autumn and I can catch up at home.
The promise of a Direct Payment has not materlised, I will chase when I get back. Not only for me but for all Carers, the fight must go on! I am really exhausted as are others on here. We should get support as a right.

I have a feeling I will throw my stuff in a bag and put a label on if I want it laundered!

On the lighter side, there was an insistence I included oysters in the dislike list. I pointed out it was a carehome not a hotel. I got a blank look! So oysters is on the list. He has never tried them either. Well keep smiling!

 

[Grahamstown]

Packing for two is very tiring especially with the ‘helpful’ suggestions given by someone flat out on the bed. Then the carrying and transporting no matter how you do it. I am by your side metaphorically and just hope it is all successful. Have a peaceful and restful time!

I went to the library after settling him down and he was still there when I got back. I got to talk to a very helpful member of staff who assisted me in finding the correct library app to read books on, and as we got talking it turned out that her 90 year old mother is in a care home with end stage dementia. She is wrestling with applying for continuing care now that her mother is needing more help from the state rather than running down her savings even more. It sounds as if she has been caught in that trap, not much saving in the first place being used up. We really had a good discussion about this disease and I pointed her in the MOOC direction which she was very interested in. This disease touches so many lives and talking about it is so beneficial.

 

[AliceA]

Oh, for the days when I had a spare room with a double bed. I used to have room to collect and pack!
No labels. No emergency stuff! AND cooperation! The anxiety levels are increasing with my husband so far more effort is needed on my part.
Yes, the more knowledge the better. We missed a family garden party, our daughter was given plenty of advice as to what I should do. One would have meant I could end up homeless!

 

[Grahamstown]

A question of respect? He has finally got up at 2.30pm, come down in his dressing gown, pyjamas and slippers for the first time, shuffling into the room and collapsing in his chair and I felt shocked, and felt that I had no respect for him any more. So shocking when I know perfectly well that it’s not his fault but that of the disease. He is a sad sight and now I have to try and get him more presentable, a shower day today because he hasn’t had one since last week.

 

[Grahamstown]

Yesterday was the first day that he hardly got up at all and spent all day in his pyjamas and dressing gown. I helped him to shower and shave with a lot of effort and that shattered him. The trajectory is down down down and I have to adjust and carry on. Life is very solitary but I had phone calls and a text message from family and friends. And going for a walk did help!

 

[Mudgee Joy]

Hello @Grahamstown and @AliceA
I think I have reached a point where palliative care isn’t an a choice - my husband gullet /oesophagus appeared to shut last week and when speaking to a geriatrician she was adamant I take him to hospital for a drip ! I did this - took 4 hours to get into emergency in our very small hospital - and after some debate the doctor put him on a drip ! It had a big effect - lifted his whole persona - and stopped the weight drain.

If possible he will have a procedure next week to open the gullet - a stent or a balloon will be used and light general anesthetic - I have looked on TP and Duggies-girl reports favourably in the same procedure and good results.

I know it may well go very wrong - but almost anything is better than constantly regurgitating food and drinks - all liquid actually - and my husband hungry and thirsty. I am not as afraid of the extra delirium- as watching his melt away quickly - on Friday he lost a kilo in 1 day. 6 kilos in 2 weeks. It’s a tough gig.

So alas we are intervening ! Not palliative. Every story is different I know but the heart felt effort to do the best is the same.
I’ll let you know how we go.
Best wishes to all xx

 

[Grahamstown]

Dear @Mudgee Joy in my mind what you are describing is palliative, he is hungry, thirsty, starving in effect and this is not right. He needs the medical care you are describing for palliative reasons, to prevent his distress and discomfort if not pain. Put your mind at rest, your actions are compassionate and right I believe. I think palliative means doing whatever is needed to relieve pain, discomfort, but it does not mean unnecessary interference with that comfort. This is not the case for you. I dread this very necessity but if I were faced with what you have described, I would do the same. I am with you in spirit and the pressure on you must be enormous xx

My husband has lost another 3 kilos but is still just within normal, hovering above underweight. His body clock is clearly all over the place because today he was up early and dressed and then back to his bed. This routine is now the current one.

 

[Duggies-girl]

Yes @Grahamstown and @Mudgee Joy a stent is palliative and just relieves symptoms. Dad has had 3 stents, one fell out and is still in his stomach, the second one he had 14 months ago and then another last October. It goes on and on. I kept him in his own home because I thought he was dying.

Last April they were talking of morphine patches, blood transfusions and hospice which frightened the life out of me. I had to make his remaining time nice for him and here we are still with dad's dementia far worse although he's fine according to him. Dad had a scan a month ago and an appointment a couple of weeks ago. All good news, his cancer is stable and the same as last year but where does that leave me. In the same place as last year I suppose. It goes on.

Dad is having trouble swallowing again though, His dinner has gone in the bin again nearly every night this week although his breakfast goes down well in the morning. I may have to ring his nurse this week and see what they can do.

How many stents can a person have. He survived pneumonia, a heart attack and a stroke earlier this year which made his dementia worse. In fact I often forget about the cancer now as it has become insignificant.

Sorry that was a long post but I thought I would update @Mudgee Joy.

I am tired of all this and I am sure dad will outlive me due to the stress I have. Dad's alright though. Deary deary me is all I can say.