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Don’t know what to do next, help please

Binky10

New member
May 28, 2020
5
Hi, I have just joined as I am desperate for help please. I am the sole carer for my 91 year old dad who was diagnosed with Alzheimer’s about 6 years ago. I moved in with him to look after him, to be honest everything has been ok, apart from the obvious repeating and continuous questions, very mobile walked very well without any aids, that was until last Wednesday when he suddenly stopped eating and was complaining of bad stomach pains, he really didn’t look very well so I phoned 111, who called for an ambulance. Dad got a thorough check over at home, everything was fine, they couldn’t find any obvious things wrong so they left. Following day he didn’t want to get out of bed & looked really ill, I phoned GP who diagnosed a urine infection (over the phone) antibiotics given. He has been in bed now for over a week and still hasn’t eaten, called the doctor out today & said he couldn’t find anything obvious wrong with him & just left??? Didn’t seem at all concerned that he hadn’t eaten for over a week. Forgot to mention that he can now hardly walk all of a sudden. Really don’t know what to do now, how can I just leave him like this?? Heartbreaking.
 

Just me

Registered User
Nov 17, 2013
386
I feel for you @Binky10 .
I’ve been through something similar a few times with mum and I know how desperate you feel and abandoned by the medical profession.

I’m surprised the doctor prescribed antibiotics without a test, the memory clinic tried to do that recently but the GP intervened and a test showed she hadn’t got a water infection.

As you’ll know people with dementia can’t always explain how they’re feeling, where the pain is, what it’s like etc.

I called the doctor two weeks ago, he couldn’t find anything wrong, said it may be a grumbling appendix. Five hours later mum was screaming in pain so ended up in A&E, had a scan a they found she had a lesion on her pancreas. It’s not acute and they wouldn’t consider an operation if it was but at least we know what the pain is and are managing it with painkillers.

You know your dad and if he’s suffering I’d make a note of all the changes and symptoms and contact your GP and tell them how worried you are.

Good luck.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,955
Kent
Hello @Binky10

Infections can have a much more damaging effect on those with dementia than those who don`t have it. I`ve never been able to understand why but hope this is the case with your dad and once he has finished the course he will be much better.
 

Woo2

Registered User
Apr 30, 2019
2,775
South East
Hi @Binky10 , welcome to Tp from me , sorry to hear about your dad . My mum went through a short phase of being sick /retching , go did check her out on 3 separate occasions but could find no reason for it . I would def call gp again as @Just me says, you know your dad best and if he is pain and not eating they really need to do more investigations. Hope you get some answers / help .
 

Binky10

New member
May 28, 2020
5
Thank you so much for all your replies, I don’t feel so alone now. I’m not sure I can contact the GP again to be honest, he didn’t offer to do any tests or anything yesterday, just said he will ring “sometime next week”?? Dad has now finished his antibiotics. Just wish I knew why he doesn’t want to get out of bed or eat anything. When I ask him, he just says he feels more comfortable in bed. It’s his physical health rather than his mental health that has suddenly deteriorated. It’s just so frustrating that I can’t seem to get any help.
 

Teragram

New member
May 28, 2020
2
Suffolk
Hi, I have just joined as I am desperate for help please. I am the sole carer for my 91 year old dad who was diagnosed with Alzheimer’s about 6 years ago. I moved in with him to look after him, to be honest everything has been ok, apart from the obvious repeating and continuous questions, very mobile walked very well without any aids, that was until last Wednesday when he suddenly stopped eating and was complaining of bad stomach pains, he really didn’t look very well so I phoned 111, who called for an ambulance. Dad got a thorough check over at home, everything was fine, they couldn’t find any obvious things wrong so they left. Following day he didn’t want to get out of bed & looked really ill, I phoned GP who diagnosed a urine infection (over the phone) antibiotics given. He has been in bed now for over a week and still hasn’t eaten, called the doctor out today & said he couldn’t find anything obvious wrong with him & just left??? Didn’t seem at all concerned that he hadn’t eaten for over a week. Forgot to mention that he can now hardly walk all of a sudden. Really don’t know what to do now, how can I just leave him like this?? Heartbreaking.
Hello Binky, my dad was diagnosed over the phone with a urine infection five weeks ago. His symptoms were becoming very much more confused, hallucinating, unsteady on feet, some lower back pain and urinary incontinence. He declined more to double incontinence but it did appear to be the right diagnosis as there has been quite a lot of improvement and he was able to return home to his home (where at least he knew where the loo was!!) from our home and he has carers 4x a day from Home Instead. They are wonderful, but his confusion is still such that he now needs residential care. After several weeks of searching, we have now found a good home, well located, COVID free and taking in new residents. We can no longer give him the support he needs. I hope you get to the bottom of what has made your dad feel so much more poorly, and look after yourself - this all takes such a toll on those of us too.
 

Anon33

Registered User
Jul 28, 2019
34
I don’t really have much advise to give but I am messaging because you shouldn’t feel alone. That’s so hard.

i have similar things with my dad in that he can’t express his symptoms so some days he just appears to be ‘not right.‘ I would feel the same as you in your situation.

i have been lucky with the GP and he has spoken at length to me about various issues. Having said that lots of things are unresolved.

My dad has had low blood pressure for quite a few days And no energo, then he had an angry day, then he his blood pressure improved and then yesterday he was crying a lot. I just don’t know what to expect. My dad does seem to be able to feel the moods around him and I have noticed he knows if I get fed up. With the all anxiety around about the virus I am working on keeping him calm.

I hope your GP is able to offer some more substantial advice To support you both.
 

Binky10

New member
May 28, 2020
5
Thank you so so much. I do feel very much on my own with this, i’m Constantly bursting into tears. My dad is my life & the thought of him not being around , well I can’t even bear to think of it. Unfortunately I am totally isolated, don’t have many friends to talk to. I can just see my wonderful dad deteriorating right before my eyes and it seems there is absolutely nothing I can do about it. I really had some hope yesterday when the doctor said he would come out to see him, but was left VERY VERY disappointed with no suggestion of what I could do. Think I will ring the social worker again this morning and see what they suggest, that is my only option now. Probably going to be a total waste of time but I HAVE to do something!! Just wish I had found this site earlier you all seem so kind and very helpful. Thank you.
 

Lalafatma

Registered User
May 7, 2020
19
Hi, I have just joined as I am desperate for help please. I am the sole carer for my 91 year old dad who was diagnosed with Alzheimer’s about 6 years ago. I moved in with him to look after him, to be honest everything has been ok, apart from the obvious repeating and continuous questions, very mobile walked very well without any aids, that was until last Wednesday when he suddenly stopped eating and was complaining of bad stomach pains, he really didn’t look very well so I phoned 111, who called for an ambulance. Dad got a thorough check over at home, everything was fine, they couldn’t find any obvious things wrong so they left. Following day he didn’t want to get out of bed & looked really ill, I phoned GP who diagnosed a urine infection (over the phone) antibiotics given. He has been in bed now for over a week and still hasn’t eaten, called the doctor out today & said he couldn’t find anything obvious wrong with him & just left??? Didn’t seem at all concerned that he hadn’t eaten for over a week. Forgot to mention that he can now hardly walk all of a sudden. Really don’t know what to do now, how can I just leave him like this?? Heartbreaking.
Hi Binky is your dad still drinking? My 95 yr old mum was prescribed Diorylite when she was unable to eat for a while. You can buy it over the counter. She didn't like it but it made me feel she was getting some fluids. Don't worry too much about the eating if he really doesn't want to but definitely worry your GP if he's not picking up to your satisfaction. You have to be really assertive during lockdown.
 

Helly68

Registered User
Mar 12, 2018
747
The two times Mummy (advanced mixed dementia) was ill were (not to scare you) constipation (tummy pain, restless) and burst appendix. The second she had an emergency operation and made a pretty good recovery. It is very hard to get to the bottom of problems, even though she was and is in a good CH, you have to keep pestering sadly.
 

Anon33

Registered User
Jul 28, 2019
34
Thank you so so much. I do feel very much on my own with this, i’m Constantly bursting into tears. My dad is my life & the thought of him not being around , well I can’t even bear to think of it. Unfortunately I am totally isolated, don’t have many friends to talk to. I can just see my wonderful dad deteriorating right before my eyes and it seems there is absolutely nothing I can do about it. I really had some hope yesterday when the doctor said he would come out to see him, but was left VERY VERY disappointed with no suggestion of what I could do. Think I will ring the social worker again this morning and see what they suggest, that is my only option now. Probably going to be a total waste of time but I HAVE to do something!! Just wish I had found this site earlier you all seem so kind and very helpful. Thank you.
Yor Words have struck a chord with me. Its like holding and watching sand falling through your fingers. It’s emotionally heartbreaking and I am still coming to terms with the fact the game we are playing I can’t win at. I can only play the game as best as I can. You are doing a great job. Your loyalty and devotion unquestionable. I understand the frustration of spending hours talking with no answers at the end.

...be proud of what you are giving your dad. Sending virtual hugs to both you and your dad. Some days the dice roll more kindly. i hope you get some help.
 

Weasell

Registered User
Oct 21, 2019
664
If you are still not happy could you not limp him into a car and then to A and E ?
He would get blood tests and you would have a better chance of them picking up a burst appendix ! they are not always that easy to diagnose !
My husband had a burst appendix, he thought he had a bug until he collapsed on the floor. Obliging people with a burst appendix are supposed to feel pain in a certain place but he didn’t.
 

Binky10

New member
May 28, 2020
5
Yor Words have struck a chord with me. Its like holding and watching sand falling through your fingers. It’s emotionally heartbreaking and I am still coming to terms with the fact the game we are playing I can’t win at. I can only play the game as best as I can. You are doing a great job. Your loyalty and devotion unquestionable. I understand the frustration of spending hours talking with no answers at the end.

...be proud of what you are giving your dad. Sending virtual hugs to both you and your dad. Some days the dice roll more kindly. i hope you get some help.
Thank you so much for your kind words, really appreciated. It’s just like being on a massive rollercoaster, dad was really unwell again this morning, shivering & shaking, I was on the verge of calling 999, when he suddenly asked for a sandwich??? I really don’t understand what on earth is going on. My head is all over the place.
 

Lemondrizzle

Registered User
Aug 26, 2018
81
My MIL was in a downturn and her care company asked to see me to look at her care planning. At that meeting I was told that it was not uncommon for people with dementia to just stop getting out of bed without rhyme or reason. I hadn't been aware of this before then.

My MIL also indicated (apparently) while she was in hospital that she had stomach pains but they were unable to find a cause.

You are right it is a rollercoaster and there is no knowing what comes next. My MIL had her final downturn and was a bit poorly one week, getting frailer and refusing food. On the Wednesday she was very frail, needed help with everything and I had to assist her on the toilet. We had security cameras which I checked in the morning before going to work to inform my decision of whether I did that or went to check on her before the carer was due. During the night she had clearly been all over the house causing havoc, including placing the vacuum cleaner on top of the cooker!!!! She had been so very frail the day before and we have no explanation of how she was then able to apparently spend then night roaming the house.
 

Just me

Registered User
Nov 17, 2013
386
Thank you so much for your kind words, really appreciated. It’s just like being on a massive rollercoaster, dad was really unwell again this morning, shivering & shaking, I was on the verge of calling 999, when he suddenly asked for a sandwich??? I really don’t understand what on earth is going on. My head is all over the place.
Just sending a virtual hug 🤗