Talking to a brick wall...

[Pigeon11]

I don't suppose I have much to complain about really but sometimes it's the little things that make a difference. As a general rule, my Dad is well cared for in the NH. But sometimes I get quite frustrated that they don't seem concerned about the same things as me.

Being at the end stages of his illness, dad is bed-ridden, immobile, incontinent, can't communicate either verbally or otherwise, he has contractures, is malnourished and generally has no quality of life. Medically, he doesn't have any acute symptoms at the moment and is quite stable, but every time I visit him I notice his eyes are sticky and sore and often he can't open them until I bathe them for him. It is uncomfortable for him as he screws his eyes ups constantly and tries to scratch them.

I have told his nurse a number of times that the GP needs to sort something and once I was there when GP visited after I asked and she just shrugged and said they didn't need treating and it was common for this to happen when patients spend a lot of time sleeping! Another time she did prescribe some antibiotics but it seems there's no continuation of treatment to prevent it recurring.

His vision isn't good anyway as he has glaucoma and cataracts and his illness is so far advanced now that he isn't aware of his surroundings or able to react to anyone, but I still don't think it is unreasonable of me to expect that when he does choose to open his eyes, he actually can. I know it's only a little thing in the grand scheme of things , but they look at me as if I'm making a fuss over nothing. Yesterday I got a bit stroppy and they said they would get GP out again today.

Generally, I do find it hard to gauge what to expect at this stage of his illness. Like I said, although he is coming towards the end of his life, it feels like he's in some sort of empty, limbo state, neither really alive nor dead either. He's been like this for so long and although I feel I should be grateful, it actually feels like a kind of slow torture just because of his poor quality of life

Oh well, moan over. Thanks for listening x

 

[Grannie G]

I don`t think you are making a fuss about nothing Pigeon. If your dad has sore and sticky eyes, which he tries to rub or scratch, it shows he is uncomfortable and what`s more , they could become infected.

The nurse has no right to `shrug` when you mention this. It is her job to care for your dad and keep him as comfortable as possible.

Just because he is coming to the end of his life doesn`t mean all aspects of his care shouldn`t be attended to.

 

[jeany123]

Pigeon I don't think you are making a fuss about nothing, I get sore itchy eyes and they are so uncomfortable sometimes like pricking pains, I have a Optrex spray that I use on my closed eyes and it makes them so much better, it must be awful for him not to be able to do anything, I would push as hard as I could to get something done, he is ill enough without something so unnecessary causing him discomfort ,

Best wishes Jeany x

 

[Pigeon11]

Thanks Sylvia. It doesn't take much for me to set off on a rant these days and it's nice to know someone's there to listen.

I know it's not a major thing, but in reality I'm just so frustrated about the whole situation. I suppose I should really be posting on the 'dealing with difficult feelings' section as, like others, I get very confused about how things are on any particular day. For example, one day I might visit and think that dad looks well and comfortable (in the circumstances) and wonder what I am worried about and then on others, it strikes me how ill he is and think I should be doing more to help. Although, lord knows what ???

 

[lin1]

Hello Pigeon
I do SO agree with you, Sylvia and Jeany

How long does it take a carer to bathe someones eyes, seconds.
To me this IS part of basic care

I would, bypass the nurse and have words with the GP and the Manager of the home stating you want your Dads eyes attended to daily so they are not gummed up and dad can open his eyes
try and get this written into Dads care plan

sometimes you have to be the squeekiest wheel in the place so they get that oil can out

 

[Pigeon11]

Thanks to Jeany too. I might try the Optrex actually - don't know why I didn't think of it before. Although knowing them they will say it shouldn't be used - or worse still it will only get used when I visit! xx

 

[mif]

I don't think you're expecting too much at all pigeon. Surely eye care is all part of your dads daily care needs to prevent infection and promote his comfort and general well being.
I think it would be best to continue to raise your concerns with the NH staff. Maybe there is an ointment that could be applied around your dads eyes so that after his sleeps his eyes can be wiped easily without the sticky discharge sticking and causing him discomfort.

 

[Pigeon11]

Lin, it is in his care plan and they say they do them several times a day and his eyes are the same minutes later! I can believe they are soon bad again as this happens when I do them, but I've never seen them come in to bathe his eyes in the whole time he's been having this problem.

I think it's that as he is in his room the majority of the time, they just forget he's there. They are good with big things but not the smaller things and they do have a lot of more challenging residents and I think they take priority. The funding for the NH changed a while ago and it's been like this since then. They seem to spend most of their time running around stopping residents from wandering, falling or taking things from rooms. When they're not doing that, they collapse into a chair exhausted! I can't say I blame them sometimes!

 

[LYN T]

Lin, it is in his care plan and they say they do them several times a day and his eyes are the same minutes later! I can believe they are soon bad again as this happens when I do them, but I've never seen them come in to bathe his eyes in the whole time he's been having this problem.

I think it's that as he is in his room the majority of the time, they just forget he's there. They are good with big things but not the smaller things and they do have a lot of more challenging residents and I think they take priority. The funding for the NH changed a while ago and it's been like this since then. They seem to spend most of their time running around stopping residents from wandering, falling or taking things from rooms. When they're not doing that, they collapse into a chair exhausted! I can't say I blame them sometimes!

Sorry this is happening.

You have every right to expect your Dad's eyes to be bathed.

If it's in the care plan the staff should be keeping records and recording when it's been done. You can look at your Dad's records to see if it's happening. As others have said write to the Manager/ Doctor if not contact CQC and they will look at the records themselves. I think they are quite hot on correct records being kept.

Take care Lyn T

 

[Pigeon11]

I really am talking to a brick wall! Went to see Dad yesterday and eyes bad again. Spoke to support worker and asked if GP had been. She didn't know and said to ask registered nurse when she came on duty. Trouble is she never arrived - or at least I couldn't track her down. Bathed his eyes myself, as usual.
Back again tomorrow and will not let it drop !!

Generally Dad is still quite stable but sleeping more and more. He is never alert but sometimes, even though his eyes are shut, I know he's awake. This is happening less and less and I can tell he is fast asleep but he does seem quite peaceful most of the time. Seems a shame to wake him up to give him his meal. Especially as he coughs at every mouthful. Even this last remaining pleasure is getting to be a trauma for him. I give him a spoonful of mush; he leaves it in his mouth for ages, swilling it around and it seems as if he is plucking up courage to swallow.

Sometimes I think it's gone but find his mouth is still full when I come to give the next spoonful. The coughing starts straight away - red face, eyes and nose streaming, food ejected all over his bedding/clothes; me wiping the chocolate pudding from around his mouth with baby-wipes. What an undignified state for a once proud man. Sitting there helpless in bed with no freedom, choice or privacy. I hate all this and sure he does too.

 

[Fastwalker]

Your poor Dad Pigeon. I had problems getting some information out of one of the nurses and threatened the manager. I soon got the information I wanted. I get different stories from the carers according to which one I speak to expect more from the nurses.

I too find that my is awake even though her eyes are closed and also that she holds food and more worryingly drink in her mouth. My mum has her moments though despite the dementia, she said my hair looked nice tonight. She also still enjoys her television. She was watching Dave tonight so I put The One Show on.

 

[lilysmybabypup]

Pigeon, I understand each and every pain and frustration. Dad decided he simply wouldn't have food, and he would be sleeping peacefully and the last thing I wanted was to wake him, implore him to take a spoonful, then have him push it out and say it was horrible. There was little point in disturbing him, but I wanted him to take nourishment. I didn't know what to do.

Regarding eyes, have you seen them get sticky soon after you've bathed them? Surely it's just an excuse. Staffing issues are so pervasive, Dad spent his first week in the locked dementia section and it took 3 staff to subdue and manage a determined resident who just walked with a walker endlessly. She was blind, would hit into objects, turn a little and keep going until she fell. She was bandaged and covered in cuts and stitches. Dad had no hope of care in that situation. He was moved to the regular high care section which meant staff didn't have all the behaviours to deal with.

Be persistent, you are your Dad's advocate and you're doing a wonderful job. Try to look after yourself too.

Stephanie, xxx

 

[Pigeon11]

Thanks for your replies Fastwalker and Stephanie. It sounds like we all have had to keep an eye out to make sure they get the care they deserve.

My dad has been in the same home for nearly six years now. I have got to know the staff well and most of them are very caring - they look after dad and me and usually do respond well if I ask for anything. They just seem to have some kind of mental block about this. ! Things have gone downhill a little since the funding changed and they have to manage such a mixed range of dementia sufferers.

I wouldn't dream of moving him as I think it would be too much at this stage so I just visit more regularly and get as involved in his care as I can. I have compressed my hours at work so I can spend more time with him. Very grateful for such flexible employers.

As far as his eating goes, I am anticipating the time he stops wanting to eat. Judging by what others have said on here, it seems this is inevitable but at least he has a good appetite now, it's just difficult for him to eat without all the coughing and he gets quite distressed with it. In fact that's the only sign of life he seems to show these days.

I sit there for hours on end and try to get some kind of reaction from him. I can easily rouse him awake but he remains still with his eyes closed. The only difference is that when awake he will scratch and or start furiously chewing his tongue (it's a habit he's got which seems to be triggered when he's disturbed or stressed).

I try to talk to him about the days events or family etc but admit I'm not very good at keeping up the chatter when there's no response. This is a very odd situation as the main thing about me is that usually, I never shut up talking!!

What a relief it is to be able to come on here and get it all out. It makes a real difference to me to be with people who understand. I'm very grateful for your support especially with what you have had to contend with recently

Lots of love xxx

 

[lilysmybabypup]

Pigeon, isn't it interesting? Mum would just sit and read with Dad, even at home, but I always felt I should engage him so I'd have all the usual topics of family ready, and just put them on a loop. Poor darling didn't recall after a few minutes so I could repeat them. It was still exhausting at times.

Stephanie, xxx

 

[Pigeon11]

Stephanie, I would find even repeating the same 'loop' difficult so I take my hat off to you for managing even that. My efforts are feeble in comparison and there is no wonder you were exhausted by it.

I have just realised that when I started this thread, the brick wall I referred to in the title was the staff at the NH (it got worse today, by the way); but the conversation has steered round to my efforts to get a response from my dad and not succeeding - so much the same thing. Not that it feels appropriate to compare him with a brick wall but I have to admit I do find (selfishly) the one-sidedness (is that a word?) and futility of it all does get very tiring.

I never realised that this stage of his illness would be so emotionally draining. It's the uncertainty of it all and the limbo-like state I find so hard. I dread him deteriorating but then think his current state is so unfair and cruel on him and everyone else.

The frustration and helplessness I feel at not being able to do anything meaningful or useful for him is overwhelming sometimes. And the fact that I can do nothing to improve things. It's out of my control (yes I am a control freak!) and I just have to let things run their course. It's all quite exhausting.

 

[Peace and Truth]

Sticky eyes

My husband is in a CH too and recently I have found him with mucky, gungey eyes and started to clean them each time, but decided one day that this needed to be properly managed, so I went into the nursing station and asked what they were doing about it. No one seemed to have noticed that this was happening; I took them back to look at my husband and they acknowledged that he had an eye infection which needed medical intervention. The doctor came next day, prescribed antibiotics and the infection cleared 'for a while'. I now check his eyes each time I go, and make sure staff are aware and insist that the doctor be asked to re-prescribe for him. This works, but I do have to keep on the case. For the most part the CH staff are excellent, but I do feel that sometimes they are so busy they make a sub-concious decision not to notice non life-threatening conditions. Don't hesitate to stand up for your father, he deserves to be able to open his eyes as and when he wishes.

 

[Pigeon11]

Peace and Truth, I agree about being too busy to notice the little, non-life threatening things and even pay attention to basic care sometimes. I don't think it's intentional or that they don't care - just a combination of being too busy and sometimes lack of supervision/direction by managers.

When I visited Dad on Thursday, he was propped up in bed and had obviously been like that for some time (he mustn't sit up for more than 30 minutes at a time as he is very frail and gets bed-sores), he still had a towel draped around his neck from his mid-afternoon drink (they have run out of aprons and won't buy any more) and his bed was covered in nail clippings. When I checked him over I noticed that although his nails were cut, they had left sharp edges - so still likely to hurt his eyes and tear his skin when he scratches - and his eyes needed bathing ...... again!

So I sorted it all out and marched off to find someone to complain to. There was only a support worker (who looked a bit harassed) and an agency nurse who had never worked there before and probably won't be seen again. Later when they brought his tea I noticed he had no vegetables with it. I asked why and was told the domestic/cook "hadn't done any puree-ed" today and apparently gets stressed in the kitchen as she doesn't cook at home. I was astounded and said I was going to complain formally.

In recent weeks, things have become much worse there. I will speak to the manager after the week-end. Here's hoping things are better at today's visit. Meanwhile I will buy my own supply of aprons and go along armed with some nail scissors - he can still be resistant to care despite his frailty so better make them blunt ones!

 

[Fastwalker]

I get frustrated with the home too. My mum has always been allergic to sausage. It makes her ill. I keep on telling them again and again. On Friday I left work early (the privilege of flexi) and went at tea time. They said she had to have soup because there was only sausage for the soft diet. I feel like saying why? Thin soup and yogurt isn't enough. I went and asked for something else and got ice-cream. When I don't go she doesn't get extra and sausage or sausage rolls are cheap! Why don't they think that soup and yogurt isn't much and get something else. The yogurts are tiny and low fat. She now gets a supper of yogurt or wheat-a-bix but it's not much between 4.30 in the afternoon and 8 in the morning. Why oh why don't people think? Over the last three and a half years I have heard every excuse from the very well thumbed book of care home managers and workers excuses for relatives so have given up complaining as it takes too much out of me. I save my energy for more important matters. I take my mum chocolate buttons and also Carte D'or ice cream which she likes judging by the amount of empty cartons I found when clearing cupboards in her house.

 

[jenrab91]

Sticky Eyes

I don't suppose I have much to complain about really but sometimes it's the little things that make a difference. As a general rule, my Dad is well cared for in the NH. But sometimes I get quite frustrated that they don't seem concerned about the same things as me.

Being at the end stages of his illness, dad is bed-ridden, immobile, incontinent, can't communicate either verbally or otherwise, he has contractures, is malnourished and generally has no quality of life. Medically, he doesn't have any acute symptoms at the moment and is quite stable, but every time I visit him I notice his eyes are sticky and sore and often he can't open them until I bathe them for him. It is uncomfortable for him as he screws his eyes ups constantly and tries to scratch them.

I have told his nurse a number of times that the GP needs to sort something and once I was there when GP visited after I asked and she just shrugged and said they didn't need treating and it was common for this to happen when patients spend a lot of time sleeping! Another time she did prescribe some antibiotics but it seems there's no continuation of treatment to prevent it recurring.

His vision isn't good anyway as he has glaucoma and cataracts and his illness is so far advanced now that he isn't aware of his surroundings or able to react to anyone, but I still don't think it is unreasonable of me to expect that when he does choose to open his eyes, he actually can. I know it's only a little thing in the grand scheme of things , but they look at me as if I'm making a fuss over nothing. Yesterday I got a bit stroppy and they said they would get GP out again today.

Generally, I do find it hard to gauge what to expect at this stage of his illness. Like I said, although he is coming towards the end of his life, it feels like he's in some sort of empty, limbo state, neither really alive nor dead either. He's been like this for so long and although I feel I should be grateful, it actually feels like a kind of slow torture just because of his poor quality of life

Oh well, moan over. Thanks for listening x

Hi, My mum's situation is very similar to your Dads and your last sentence says it all "it actually feels like a kind of slow torture just because the poor quality of life". I see my mum about 4 times a week and some days my heart beats so fast as I go into the Care Home as you never know from day to day what you are going to find. I also sleep badly as the moment I wake I think of her lying in her bedroom on her own unable to shout out if she needs anyone and it breaks my heart to see the person she has become and the sufferring she has endures when she has been such a wonderful mother and friend. I bathe my mum's eyes every time I visit as they all stick together and she cant open them. She has moisture drops but they dont help any more. After I have bathed them I just put a small amount of vaseline on her lid as this seems to stop the discharge from going hard and glueing them together. I have mentioned to the doctor and Care Home and they say that they do bathe them and put in moisture drops but sometimes they are terrible. Also does your dad have his food pureed? All my mums food is pureed and they put thick and easy in her fluids which makes it thicker and easier to swallow.
My mum has now been in Care home for 2 years and she will be 94 in December and she was amazing until about 87 then started gradually going down hill. Sometimes I feel so desolate about the whole situation and think how can life be so cruel. It is the most vile stressful unkind illness I have ever witnessed. All we can do is be there and do our best.

 

[Pigeon11]

Hi there, sorry to hear about your mum. I know the feeling well of just not knowing what to expect when visiting. Dad's deterioration is very gradual but distressing none the less. He's been on residential care for 7 years but must have been in this advanced state with not a lot of drastic change for about three years now. He's been on a pureed diet (including drinks) for well over a year, more like two. The latest development is the constant coughing and choking even on puree which has been happening since last summer. I just don't know how he keeps going. He only weighs 6 stone!

I will try the tip with Vaseline to see if it helps. The problem is that they tend to forget so it will probably only get done when I'm there.

Your Mum has done really well to live to such an age (my Dad's only 78)and it's a blessing that most of her life she has been independent and well, but you are right about this illness being stressful and unkind. Like you, I seem to spend most of my time worrying about him. I think my family think I am obsessed - but somebody has to be as they don't really bother with him.

Fastwalker - that's really bad with the food. It's a little better where dad is most of the time but they do have their moments. I do know what you mean about the complaining taking it out of you. It's just another problem to deal with and most of the time I just think I will sort things out myself .

It's a good job we can all come on here and let off some steam. I never realised how much comfort it would give me but it's such a relief to know someone really understands. If I start telling my siblings about things, I can see their eyes glazing over.