How much longer.......

[WIFE]

That's the rollercoaster, Jaymor. This time last week and probably a month before that I would have given my husband a few more days of life only to visit the next day and find him not exactly cheerful but talkative (usually about death and dying or gassing or bombs) but at least talking. Last week he wouldn't eat or drink - today he finished off a sausage, mash, cauliflower and onion gravy followed by rice pudding and marmalade! Tomorrow he will probably be on hunger strike again or brewing yet another UTI. I too dread going each day - sometimes have to sit in the car park for five minutes or so to steel myself for the unknown - could be a wrecked room or him so fast asleep in his chair that nothing will rouse him.

I so wish it was different - that visits could be pleasure but I am sure we will find the strength to see them through to the end, somehow.

Fond thoughts for you both

 

[Pigeon11]

Well, Thursday's visit made me furious!

I asked to see the qualified nurse so I could arrange to sort dad's pain relief out. But was told there was no qualified nurse on duty on his cottage - just 2 nurses for the four cottages (around 50-60 people in total) when there's supposed to be four. When I pressed for it, the support worker told me she would leave a note in the diary for the GP to review it but said she "hadn't seen any sign of pain on interventions" (and looked at me as though I was daft).

He only has a small (10mg?) Fentanyl patch but I don't think it's enough. He can't express himself due to complete lack of communication skills and immobility so can't say if he's uncomfortable but he has intermittent bedsores, osteo-arthritis in his knees, contractures throughout his body and is severely under-nourished I think it's no stretch of the imagination to expect he is in pain/uncomfortable and this is increasing as he is losing weight, becoming more immobile.

I asked if they could give me an update on his weight but they said they had lost the details from the last time he was weighed as the person who did it had left before entering it on the computer. He hasn't been weighed for over a month when they told me before it is supposed to be weekly.

As usual, he didn't eat all that much and choked throughout his meals. And he has three pressure sores on the side of his foot as he is so thin that despite the airflow mattress, any slight pressure on the bony bits and his skin breaks down. He also has pressure sores on his fingers due to contractures in his hands and on his sacrum area due to being in bed all the time.

When they came in to turn him, he let out a bit of a moan (if that doesn't convince them he is uncomfortable, what will?) Afterwards, I asked him if he had had enough, and he said, very clearly, "Yes".

He rarely utters a word these days and he has no cognition whatsoever. He reminds me of a radio that needs tuning in - every now and then there is a fleeting moment of clarity. It may have been coincidence but my instinct told me that he understood - just for a second.

When I go tomorrow, I will demand some answers!

 

[garnuft]

Oh Pigeon, I don't know how I missed your posts about your Dad, I'm sorry that I did.

For me, with my mother, the most important thing was relief of pain, discomfort or distress.

I wanted for her what she would want for me, what I would want for all of us...relief from pain and discomfort.

Personally I wouldn't stress about the weighing regime, in fact being weighed might be stressful in itself but I know where you're coming from, it is very distressing to see your loved ones fade away from want of nutrition.

I know, because I was with my mother every day and had all the time in the world to help her to eat and drink, to coax, cajole and beg even; she didn't want to eat or drink.
Her body did the talking.

It is a painful thing to watch and so, for me, the next best thing I could do was make sure she was pain, discomfort and stress free.

But I would want some straight talking to and from a Doctor

I would state that I want/insist Dad's GP to visit while you are there and ask some plain questions...

'Is your Dad dying?'

'Do they expect him to recover from this episode?'

He can receive palliative care treatment by a team specifically trained to deal with comfort and care at the end of life.

If you don't ask the questions, you will forever wonder.

Best wishes, it is a hard time for you and your Dad. x

 

[Pigeon11]

Hi All
Thought I'd better apologise for the rant on my last post. Also for being negative all the time. I know there are lots of you in the same situation and how hard it is for you too. So sorry for whinging on but I just wanted you to know that it really helps to talk.

An update on Dad: I went on Sunday to be told they though he might have a chest infection and that they would ask his GP to see him today. He was already listed for a GP visit as I had asked for his pain relief to be reviewed. I thought I would go again today to see if I could catch the GP but she wasn't coming until after tea and I wasn't able to stay that long this time.

She did ring me later, which I was grateful for. He doesn't have a chest infection apparently. She thinks the congestion that was noticed is due to the food he has mis-swallowed accumulating in his windpipe/lungs - which sounds just as bad to me.

She doesn't want to increase his pain relief as it may make him too drowsy. She says that pain is to be expected as he has severe contractures but she needs to get the right balance and will ask staff to monitor and review next week.

She did make a point of saying that he is deteriorating and is at a very advanced stage of his illness. I was glad to have this confirmed as although it may be obvious from his condition, it's the first time I've actually heard anyone actually say this and sometimes I think I am imagining things.. She said the only thing that can be done now is to keep him comfortable, which I knew really.

I suppose it's just a matter of waiting now, but how I wish that it didn't have to be so cruel. I just want him to have some dignity and a quiet, peaceful end. He doesn't deserve this at all.

Thanks all, for listening.
x

 

[LYN T]

Hi Pigeon

You are right-he doesn't deserve this at all.

I urge you to keep in contact with the GP as pain relief,IMO, is imperative at this stage.

I'm so sorry this is happening

I'm thinking of you at this very difficult time

Lyn T XXX

 

[Pigeon11]

Hi Lyn

Thanks for the advice. I will make sure I am there when the GP calls again next week. It was difficult to talk today as she rang me on my mobile number and the signal was rubbish. Also she was a little hesitant with information and I got the impression she felt she had to beat around the bush a little - but I'd rather she told it like it is. I think we need a face to face chat.

I must say I was surprised about her reluctance to increase his pain relief as he is on a very low dose. Surely being drowsy is the least of his problems as he sleeps most of the time anyway.

I have just started to read through your thread and it seems we are in a similar position. Thinking of you too and hope things aren't too difficult for you at the moment.

Take care

x

 

[jawuk]

Hi Pigeon I agree with you that pain relief is THE most important thing if your Dad is in the final stage - and as you say if he's sleeping most of the time increased drowsiness hardly signifies, unless the GP thinks there's some quality of life in pain keeping him awake. I also think that a week is too long for a 'see how it goes' - these may be the last weeks he has and he deserves to have this time peaceful and pain free.
I do hope that things get sorted out very quickly for your poor Dad x

 

[Witzend]

Hi Lyn

Thanks for the advice. I will make sure I am there when the GP calls again next week. It was difficult to talk today as she rang me on my mobile number and the signal was rubbish. Also she was a little hesitant with information and I got the impression she felt she had to beat around the bush a little - but I'd rather she told it like it is. I think we need a face to face chat.

I must say I was surprised about her reluctance to increase his pain relief as he is on a very low dose. Surely being drowsy is the least of his problems as he sleeps most of the time anyway.

I have just started to read through your thread and it seems we are in a similar position. Thinking of you too and hope things aren't too difficult for you at the moment.

Take care

x

I think I would ask that GP if she would deny her own parent pain relief at this stage. Does it really matter if it makes him drowsy?

 

[LYN T]

Hi Lyn

Thanks for the advice. I will make sure I am there when the GP calls again next week. It was difficult to talk today as she rang me on my mobile number and the signal was rubbish. Also she was a little hesitant with information and I got the impression she felt she had to beat around the bush a little - but I'd rather she told it like it is. I think we need a face to face chat.

I must say I was surprised about her reluctance to increase his pain relief as he is on a very low dose. Surely being drowsy is the least of his problems as he sleeps most of the time anyway.

I have just started to read through your thread and it seems we are in a similar position. Thinking of you too and hope things aren't too difficult for you at the moment.

Take care

x

I always make sure I'm there when the GP is called out to Pete. Some GP's do beat about the bush-sometimes we have to ask the important questions and even then we have to push for the answers. I guess GP's are as reluctant as any other person to give bad news. I'm lucky in as much as the CH Manager and Senior staff know that I can't cope with anything less than the truth.

My thoughts are with you

Lyn T XX

 

[Leolady56]

4 Pigeon

Pigeon I am new on this site but my heart went out to you when I read your letter. Because I don't know you I don't want to say things which might come across as being cold-hearted or insensitive but I honestly feel that your dear old dad is coming to the end stages of his life. It's something which we *all* go through, Pigeon in one way or another and it is something which is *always* difficult and emotionally very draining.
In my own humble opinion, I would let your dear dad sleep for as much as he needs to because his worn old body is telling him that this is what he needs. So long as they take meticulous care of any body sores - that should be priority number 1 so that he can just slumber and be allowed to move as peacefully and lovingly towards the end phase of his life. (Please, I hope you won't hate me for saying that as I honestly am not trying to be unkind or to hurt you!)
I know that at some of the Alzheimer's homes here where I live, when patients are simply no longer able or willing to eat, carers often take chocolate lolly pops which they wipe over the patients lips every so often so that they can get the enjoyment and teeny, tiny bit of sustenance from the chocolate and I have seen many 'oldies' really enjoy this experience even though they really no longer wanted to eat.
I think at this point it really is all about keeping your dad as comfortable as humanly possible and anything which can bring his pleasure through his senses will bring him some happiness. Find a spot on his skin where he is not in pain or discomfort and apply one of the top of the range skin creams for people with very thin/irritated skin and many old folks seem to get a lot of joy simply by the sense of touch, massage and any skin-to-skin enjoyment you can give to your dad - that, I am sure will bring him a sense of joy/pleasure even if he can no longer verbally tell you...
All my best wishes to you. This is an incredibly difficulty illness to watch a loved one go through so be kind to yourself - everyone will understand fully that you break down sometimes, that you have crying jags and yes, that out of a very deep sense of love - you hope that your Dad can pass on so that finally he will be out of this uncomfortable and painful way of love.

Sending warmest hugs your way

 

[Pigeon11]

Thanks again to all of you who have replied since my last post. It made me think more about what you all said about the need for more pain relief.

I think the GP is hesitant because Dad already has a small morphine patch and she didn't witness any signs of discomfort when she saw him - he was peacful and quiet like he is for much of the time. I think the medical practitioners have an established set of pain indicators they look for in those who are uncommunicative - one of which is agitation. But I don't think they take into account that he is so far advanced, his 'agitated' is more subtle than it would be in others. And as he is so isolated and the care staff are so busy, they don't see him for long periods of time or notice what I see when sitting by his bed for hours on end, ie him screwing his face up, and the repetative movements - chewing his tongue and rubbing his finger and thumb together (more or less the only movement/agitation he can manage).

To add another dimension to it, my daughter is a qualified nurse and she was telling me that morphine can surpress the respiratory system resulting in premature death. These days (because of Dr Shipman), so concerned are they about the potential for being accused of some criminal act, GPs are meticulous about not over-prescribing and only do so when it is 'evidence-based' (I hate that expression) and after using a specific formula.

To be honest, I don't really care about all this. He is very near to the end of his life and I think the risk that he might be in discomfort far outweighs the risk to them that he dies prematurely. There is considerable risk attached to feeding him anyway due to the choking and posiblity of chest infections so risk is inevitable at this stage. As harsh that this is to say, he has already lived considerably longer than he would have wanted; so to me, there is no question of his passing being premature.

I don't want the GP to do anyhting unethical or improper, just to be less risk-averse.

Leolady56, welcome to TP and thanks so much for your kind words. Please don't think anyhting you said had upset me. Your words were so obviously intended to do the opposite and I appreciate the sentiment, really I do. But I am realistic about what the outcome to all this will be. It's hard to see it as being really the end as he has had a very slow deterioration and the illness is very unpredictable, but I know it can't be much longer and this gives me comfort.

He can still eat (though with great difficulty) so he still has his meals and treats and I keep him company and have seen to it he is disturbed as little as possible in temrs of daily care. All I can do now is this last thing - make absolutely sure he isn't in pain. And I won't rest until it's sorted.

 

[Kate_S]

Hello Pigeon and all other commentators. Same for me, in that my Dad is now in hospital following a chest infection. he is now clear of infection, has good blood pressure, but he absoloutely refuses to eat. Hospital not sure what to do next, as he can't remain there indefinitely. his care home I'm sure cannot take him back, as his needs are now too high. I'm afraid he will be sent miles away whereby my Mum who is 84 will have to travel to on public transport. I feel in limbo, wanting my Dad to revive a bit so he can talk to us, and also want him to go peacefully. I keep crying, but can't do in front of Mum as I need to stay strong for her

 

[RobynNZ]

No-one prepares us for this path

Hi all you brave and caring people. I usually take a look at this site when I'm feeling down but haven't often posted any comments. Just knowing that others understand the hard road of dementia helps enormously.
My mother of 96 yrs has been in a care home for 2 yrs. She has had numerous falls and broke her arm last year. After another fall and small stroke in March she was hospitalized for 3 weeks and the doctor said she probably had 6 mths at the most to live and probably wouldn't walk again as she wouldn't remember how to. Amazingly she has been doing quite well but very thin and quite drowsy at times - always in her own little world but knows me. She is on medication to help her mood swings which has helped. Lately she has had a couple of falls trying to get out of her recliner chair. She had started to walk a short distance with help and the aid of a walker but has no understanding of any dangers. The staff keep me informed but when they phone to say she's had another fall and then find new bruising I feel so helpless. I know they can't be with her 24/7 and I visit every few days. Unfortunately I have no other siblings in NZ and although my husband and daughter are understanding they don't get upset like me which is just as well - I feel so depressed at times. We would like to go away for a few weeks holiday but I find it hard to feel enthusiastic or put our needs first - Mum always says how she misses me when I leave. It's good to be able to express how I feel and this is why the Forum is so valuable. Somehow we find the strength and we care too much to run away from our responsibilities. Love to all.

 

[Pigeon11]

Thanks for commenting on my thread Kate_S and RobynNZ. Sounds like you're both having a tough time at the moment. You are both in the right place though if support is what you need. Keep strong and keep posting!

A bit of an update on Dad. He is still eating, though with difficulty as always, however he's lost more weight and is only 34kg (5st 5lbs) now. I was surprised the weight loss has continued, as overall I didn't think he was eating that much less than before. But I read that in the later stages, the body doesn't process the food as well so he can still lose weight despite a similar calorie intake. At least he still wants to eat though which is a relief. I know there will come a time when he doesn't but will cross that briege when we come to it.

He is very still and quiet and looks reasonably comfortable but I've noticed he has developed a number of pressure sores down the side of one foot. I spoke to the nurse and I'm satisfied everything possible is being done to prevent them. He has an alternating pressure airflow mattress and they turn him regularly, it's just that he is so thin, there's nothing to provide any cushioning.

The GP is coming today but no idea what time so I will have to sit and wait for the afternoon). At least i should be able to have a proper chat and ask all the questions Garnuft and others suggested. I haven't met with her for 2 years so it will be interesting to see what she thinks of him now

 

[Pigeon11]

Spoke to Dad's GP today. She doesn't think he needs any more pain relief. Apparently they have been keeping a pain chart all week and there is nothing to be concerned about. She accepts he may be more uncomfortable when he is moved but can't increase his medication on this basis as it will make him too sleepy and then he won't be able to eat.

I feel quite reassured at this but am sure they think I have made a fuss about nothing but I would rather be safe than sorry.

I asked how she though he was generally and she said he was at the end of his life and was being "treated palliatively" but that it was quite possible he could live for years yet. She had a completely different way of looking at things than me and didn't seem all concerned about his low weight or general frailty. In facts she even said he was content and happy in his own world (which I can't accept).

I don't know how all this makes me feel if I'm honest.

 

[Witzend]

She had a completely different way of looking at things than me and didn't seem all concerned about his low weight or general frailty. In facts she even said he was content and happy in his own world (which I can't accept).

I don't know how all this makes me feel if I'm honest.

I think it is rather different for medics and carers who did not know the person before. It is all very well for them to say the person is 'happy' just because they are not obviously in pain or discomfort, and not obviously agitated or distressed.

We who knew them far better than these people ever could have, know it is a wretched existence for them. I know the CH staff think my mother is 'fine' - for her age and state of dementia. I think they would be happy to see her go on for another ten years, until she is 106. She does not give them too much trouble, whereas a new resident in her room might be a lot harder to cope with. I suppose I cannot expect them to understand how I feel, and how cruel I think it is that my mother has had to endure such a pitiful and wretchedly undignified existence for so long.

 

[Pigeon11]

Witzend I think she was trying to get me to see things from a more postive point of view and reassure me that he was happy and comfortable. I appreciate her kindness , but don't seem to be able to manage to think that way. I hate this illness and feel constantly resentful of how cruel it is.

She actually said that what made him happy in the past wasn't relevant as he was no longer the same person due to his lack of cognition - this meant he had changed needs and a different perception of happiness. If this is the case, I don't undertand that for the past 12 years I have been encouraged to take his 'former' personality/wishes/beliefs into account!

She also suggested I try to be "a little more Zen" ! I think that was her tactful way of telling me to cheer up and be more accepting of the situation. But it's not my nature. I'm not really a spiritual person - in fact I am a self-confessed control freak and like things to be clear, certain and 'sorted-out'.

Oh well perhaps converting to Buddhism may be worth a try for some peace of mind?!

 

[Pigeon11]

Nothing new to report but decided to keep this thread going as 'therapy' and to help me keep track of things.

I went to dad's yesterday and he slept through the whole visit, just waking, but not opening his eyes, for his tea. He is going through a slightly better phase with eating as although it's difficult, he still wants to eat and managed everything offered to him.

He looks terrible though and really disheveled as his hair badly needs cutting, but I don't want to get him out of bed and even if I did I'm not sure how we would manage to cut his hair in a recliner chair, which is all he can manage really. Last time we (my niece is a hairdresser and I persuaded her to do it) propped him up with pillows and balanced him in a in a wheelchair but it was all a bit precarious. If he wasn't so rigid throughout his body due to contractures, he wouldn't be able to sit up at all .

It's these little things that are so important for his dignity and my peace of mind that become so difficult, This sounds a little harsh but I would't disturb him at all if I thought he was really close to the end of his life. But he's been like this for so long I fear he might go on forever and can't just leave him looking so neglected.

Any ideas anyone?

 

[VickyG]

Nothing new to report but decided to keep this thread going as 'therapy' and to help me keep track of things.

I went to dad's yesterday and he slept through the whole visit, just waking, but not opening his eyes, for his tea. He is going through a slightly better phase with eating as although it's difficult, he still wants to eat and managed everything offered to him.

He looks terrible though and really disheveled as his hair badly needs cutting, but I don't want to get him out of bed and even if I did I'm not sure how we would manage to cut his hair in a recliner chair, which is all he can manage really. Last time we (my niece is a hairdresser and I persuaded her to do it) propped him up with pillows and balanced him in a in a wheelchair but it was all a bit precarious. If he wasn't so rigid throughout his body due to contractures, he wouldn't be able to sit up at all .

It's these little things that are so important for his dignity and my peace of mind that become so difficult, This sounds a little harsh but I would't disturb him at all if I thought he was really close to the end of his life. But he's been like this for so long I fear he might go on forever and can't just leave him looking so neglected.

Any ideas anyone?

Hi,

So sorry things are still as they are for your dad and yourself, it won't be this way forever, although I think we just end up getting swept away with everything and then, all of a sudden the situation does change.
About the hair cut, I know what you mean, mum always took pride in her hair but I was in the same position as yourself, and the chance never arose. I managed to wash mum's hair about 5 days before she passed away, ( 1st August ) never managed to get it cut. I spent ages worrying about it but, in the end, I felt it wasn't that important to be honest. I couldn't of sat her up whilst she had it done, her poor little body just wouldn't of been able to withstand it. It was very difficult to just wash her hair and dry it ( I had an inflatable sink, so washed her her on the bed as she was bed bound, then sat her up and supported and padded her out with loads of pillows ) and I had to be quick otherwise she would start leaning and slipping to one side. It's all about making the best of what you've got i guess. Anyway, mum looked beautiful regardless of not having her hair cut and like i said, in the grand scheme of things, it wasn't that important.
If you really want to try and get your dad's hair done, I can't really suggest anything other than perhaps sitting in a wheelchair ( if he can transfer ), so he's a bit more upright, and his head is free of obstruction, and padding him out with pillows. It's really difficult in a recliner as they tend to lean back and it's getting right in at the back which is difficult.
Anyway, good luck and let us know how you get on.
xx

 

[Pigeon11]

Hi VickyG

How are you doing - ok, I hope, in the circumstances? Thanks for replying - I know it's difficult time for you and you're very kind to take the trouble, especially as a haircut is such a trivial thing in the grand scheme of things.

My niece is going to come over again at the weekend and we'll give it a try with the wheelchair and pillows. I think we'll have to make a judgment on the day if he's up to it. Sure the care-workers will advise us on the best thing.

My niece has only started to see her granddad just recently. Like her many cousins, she had always said she wouldn't go as she couldn't bear to see him but then she stopped the hairdressing and started work in a care home and it toughened her up a little. We have a lovely, touching photo of her cutting his hair in his room. I know she feels better for having seen him and done something for him .

Thanks again
xx