Not sure what to do next

Krug 22

Registered User
Dec 12, 2015
74
0
For several years I have been worried that my husband is developing Dementia. However, he is a very controlling man, 23 years older than me and I have been very wary of confronting him. His short term memory is dreadful, he has burnt every pan in the house when trying to cook, lost a lot of weight so is on Fortisips and won't take his medication properly despite me prompting and buying a special notebook to try and prompt him.I can only push so far as he will ask me 'which medical school I qualified from' and he also says if I tell anyone, they won't believe me as he was MD of a PLC and I am a 'nothing'.

He also has physical problems. I did write to his GP with regard to my concerns late last year. She acknowledged my letter when I went with him to see her about something else. He has now been refered to a Geriatric Consultant to try to deal with the pain. At the second appointment, we saw one of his colleagues, and I was able to quickly mention my concerns whilst he was having a blood test.

The main worry is he will not take his lactulose properly. 111 sent someone out on Sunday as he had problems going to the loo, and was in a lot of pain and could not urinate. Fortunately an enema sorted this out. Yet he still won't take the lactulose. I cannot blame the NHS - the GP, the Consultant, and the District Nurses who have been coming twice weekly to dress his legs all have stressed he must take it or the Cosmocol, as due to his diet and medication including painkillers, he is liable to have problems passing motions, He will literally go 5, 7 even 10 days and then start slugging lactulose from the bottle and will of course then have diahorria. One GP told us that my husband was at serious risk of having an impaction.

He is very forgetful re pain medication which he takes when needed. I do sort out the morning and evening tablets but it is much harder to monitor the painkillers especially since he takes them in the night. I think he has been overtaking some of them but have no way to easily stop it.I do order the medication from the chemist for him so am aware of this.I have tried putting out a limited number of painkillers but he goes into the cupboard and gets more out.

He had a cataract operation 3 weeks ago but would not wear the eye shield.He was a nightmare to get to take the drops 4x a day despite constant prompting. He also keeps saying that he is better educated than the medical staff.I tactfully try to say that yes he is, but they are experts in their subject.

I do not know what to do next. I hand on heart do not think he would go to a Memory Clinic if asked and he could get very aggressive with me. I do think this lack of self care, forgetfulness and lack of appetite - although he eats a lot of chocolate, could indicate dementia? I have to watch him constantly.He let the sink overflow very badly when soaking his underpants a couple of weeks ago. He then would not admit it and let me think it was the toilet as he had flushed a pad down there earlier and flushed chain before i could get it out.

Frankly it is like living with a toddler at times.

I do feel we are in the 'grey' area where most medical staff would say he had 'mental capacity' but he is not looking after himself or making decisions in his own best interest especially health wise. I have no family support so am with him 24/7. If I were to ask the GP to progress the Dementia, do you think they would do a scan? He had a heamatoma 5 years ago so maybe it could be presented to him as a follow up? I have found he is putting the medical staff onto me more and more when they phone so he must be aware that something is wrong although he is in denial and says it is because they have accents and he is a little deaf.

Well thanks for reading. I really want to know what happens if a dementia diagnosis is pursued by a family member. I realise it may not be possible if the patient won't co-operate.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hi @Krug 22
so challenging for you
does your husband listen in when he hands the phone over to you? if not I would bend the ear of anyone and everyone who contacts you - including going to see your GP on your own to discuss how all this is affecting you, so details are on your records as well as your husbands
if your husband does listen in, can you ask that you call back (use his excuse, say it's a bad line and you can't hear so need to switch handsets ... or something) but fudge the time in some way so you get to call them when you are able to speak bluntly
maybe fudge the 'Memory Clinic' issue by calling it something he would deal with? - the follow -up you suggest might work
I certainly would 'be economical with the truth' in whatever way will get you want you need

as for the lactulose - as it's a liquid, can you hide it in a drink your husband accepts (I think this is fine and won't alter its effectiveness - but you can check with a pharmacist)
and on the quiet ask the pharmacist to prepare/deliver any pills in the dosette boxes most pharmacies use - you might tell your husband this is a new policy to save overprescribing meds - it might be easier for you to tell what's being taken and doesn't appear to be you trying to control anything; you're just doing what the GP says
 

Delphie

Registered User
Dec 14, 2011
1,268
0
Yes, you're right. If he's judged to have capacity then no one can make him do anything. And even if you got him to participate enough to get a diagnosis, unless he engages with the next bit (perhaps taking medication) then you're back to square one.

That said, it's not impossible to involve the social services at this stage to get him, and you as his carer, assessed as far as needs and what's in place to help out. Getting him out of the house (day centre, lunch club etc) could give you a bit of breathing space. He'd probably say a big fat no if asked whether he wanted to go, but some carers get around this, sometimes by fibbing!

Ultimately, though, some people (my mum was one) are completely resistant to help. Social services will step in if things like self-neglect get to dangerous levels but where that level is is subjective so you might be constantly on edge as the house floods and burns but others might see stuff like that as pretty minor.

One last idea - you could flag him up as a vulnerable adult, with the social services, then say you're going away for a couple of weeks and they have a duty of care. Then go. Have a break. Much, much easier said than done of course but that 'grey area' might not be so grey without you there, doing everything that you do to keep him safe.

I really feel for you. This was a horrendously stressful time for me, with my mum clearly failing to keep herself clean, warm, fed, safe and so on but with enough capacity (apparently) to be left to her own devices, with me trying to help in the face of her anger and aggression. If it is dementia then this stage will pass. Cold comfort, I know.
 

Krug 22

Registered User
Dec 12, 2015
74
0
Thanks for your replies. I read your post Delphie and could really relate. Sadly holidays are not possible as I breed pedigree cats occasionally and show them, and no way could i leave him in charge of them. A cattery is not an option as I have quite a few. I also frankly would worry about him trying to cook and leaving the gas on or forgetting to take the pan off the gas. I just would not know what I would be coming home to!

We have different GP Surgeries so quite difficult but I did write to his GP and she did put a piece of paper in my hand as I was leaving saying she had noted my comments.She had whispered to me that he appeared confused, when he was getting ready for the physical examination at an earlier meeting. Unfortunately he heard her and made it clear to me when we got home that I was never to whisper to his GP behind his back. I had to lie and say she was worried he was overdosing on the morphine. He has also been threatening to change GP surgery although he left my surgery because he fell out with my GP and threatened to sue him! I stayed with my Surgery because it is walking distance and my GP is very good and tells me what is likely to happen re the NHS not what SHOULD happen.He tends to shoot from the hip, but I admire his honesty. He did explain'Mental Capacity' in great detail when my late father was going downhill but would not go into hospital.I do agree at times it would be a lot easier to have the same GP. I think I may write to the GP again I am keeping a diary of the confusion and I do think she needs to know if he is overtaking the painkillers.

Sadly he hovers when I am on the phone. Even when my Carer Befriender phones, he is on the sofa listening.He cannot understand why I have a Befriender when he is the ill one! I have suggested the Age UK coffee morning but he is not interested. He doesn't really drink anything but coffee and Fortisip. It is 5 days since we had the emergency GP out and he has not been to the loo so just waiting for a difficult bank holiday with him crying in pain but he just won't take the lactulose and i do prompt but beyond a certain level he gets very nasty. He has had a very bad bout of cellulitis so is spending a lot of time on the sofa.

I may try the pre packaged tablets but he does get confused as to what day it is but it may at least limit the risks of overdosing.

Would a Geriatric Consultant be able to pick up dementia? I did not see the original one but I was able to at least mention it to his colleague as she just could not understand why he was not taking the lactulose/Cosmocol when he was in such pain. He does have divictular disease and constipation can make it much worse to the point he is crying in pain. He has had a pelvic scan this week to rule out anything sinister and just waiting for results.
 

Peachez

Registered User
Jun 19, 2016
124
0
South East England
have you tried flattery? tell him it's BECAUSE he's so high functioning, that he has to get the GP to send him to a 'special' clinic? How can ordinary medical staff be qualified enough to help him eh? ;)
 

Krug 22

Registered User
Dec 12, 2015
74
0
I do not think he would fall for that sadly. I think my only hope, and it sounds dreadful, is that he has to go into hospital. If he were being observed 24/7 it would be much harder for him to put on the act and I would not be there to prop him up. He has had bleeding from the back passage again today - did not know it was there until he got up and it was all over his dressing gown. What I really find hard is that as a carer, with no medical knowledge, we are expected to deal with things like this. Will observe and if it continues may ring 111 over the weekend but do not want to get a medic out if it is just constipation.
 

kindred

Registered User
Apr 8, 2018
2,941
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I do not think he would fall for that sadly. I think my only hope, and it sounds dreadful, is that he has to go into hospital. If he were being observed 24/7 it would be much harder for him to put on the act and I would not be there to prop him up. He has had bleeding from the back passage again today - did not know it was there until he got up and it was all over his dressing gown. What I really find hard is that as a carer, with no medical knowledge, we are expected to deal with things like this. Will observe and if it continues may ring 111 over the weekend but do not want to get a medic out if it is just constipation.
Please, do not be afraid of getting a medic out for what you say is just constipation - this can be serious and you need help. Please get it if you need to. Yes, we are expected to deal with things like this. In my case, it had to come to a horrible accident and a and e and hospital admission to get the help I needed. But this takes a huge toll, I am still recovering although OH seems perfectly fine in his nursing home now. Anyway, just to say, please do not be afraid of getting help, phoning 111. It would be a good and responsible step.
 

Krug 22

Registered User
Dec 12, 2015
74
0
Thanks Kindred - yes I will phone if I see any more blood but he had an enema last Sunday so do not think it is an impaction as yet. Wish I had kept the dressing gown to show, but he wears 2 and I am constantly trying to stay on top of getting them washed and dry in time! He did say just when I was on the verge of gong to bed that it was not blood but ribena and he drank it and it went straight through him! No way could he have spilt ribena but yes,he may well contradict me if I get someone out or ask a 111 nurse to speak to him. I honestly think he is in denial and not sure he would agree to go into hospital or be taken to hospital. I am keeping a note though and hopefully the nurse will come to dress his legs on Monday and I can at least mention. He may well contradict me but at least I will have tried.......... I can see it getting to the stage where he loses consciousness or falls before we get help but I shall keep on monitoring and noting things down. I hate bank holidays!!!!
 

kindred

Registered User
Apr 8, 2018
2,941
0
Thanks Kindred - yes I will phone if I see any more blood but he had an enema last Sunday so do not think it is an impaction as yet. Wish I had kept the dressing gown to show, but he wears 2 and I am constantly trying to stay on top of getting them washed and dry in time! He did say just when I was on the verge of gong to bed that it was not blood but ribena and he drank it and it went straight through him! No way could he have spilt ribena but yes,he may well contradict me if I get someone out or ask a 111 nurse to speak to him. I honestly think he is in denial and not sure he would agree to go into hospital or be taken to hospital. I am keeping a note though and hopefully the nurse will come to dress his legs on Monday and I can at least mention. He may well contradict me but at least I will have tried.......... I can see it getting to the stage where he loses consciousness or falls before we get help but I shall keep on monitoring and noting things down. I hate bank holidays!!!!
Me too, sweetheart, me too. Yes, keep monitoring. Get help when you need to. And if he does get a hospital admission, however short, then ask to see the social worker there. That is how I got help in the end. I say in the end because it was a ghastly journey, as you will understand. Please also keep a note of when he gets aggressive with you. Thank you so much for posting, here for you. Even on Bank Holidays!