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I suspect my father may be struggling with dementia...

AztecCamera87

Registered User
Mar 12, 2019
132
Im not really sure what we will be able to do when dad is discharged from hospital, hes in pain every time he moves, if the hospital find no real damage, then hes back home. But if we are unable to move him from his bed or chair, how will we cope....
 

Rosettastone57

Registered User
Oct 27, 2016
1,169
Im not really sure what we will be able to do when dad is discharged from hospital, hes in pain every time he moves, if the hospital find no real damage, then hes back home. But if we are unable to move him from his bed or chair, how will we cope....
I'm sure others will be along soon with better advice regarding this, but this happened with my mother-in-law last year in hospital. This was one of the tipping points for my mother-in-law to go into care. However she was completely self funding. Your situation is untenable and I think you should be saying to the hospital that your father will be unsafe at home and the current care package is not working. Unfortunately I can't advise on dealing with hospital social services as I have no personal experience.
 

AztecCamera87

Registered User
Mar 12, 2019
132
I'm sure others will be along soon with better advice regarding this, but this happened with my mother-in-law last year in hospital. This was one of the tipping points for my mother-in-law to go into care. However she was completely self funding. Your situation is untenable and I think you should be saying to the hospital that your father will be unsafe at home and the current care package is not working. Unfortunately I can't advise on dealing with hospital social services as I have no personal experience.
I managed to speak with a doctor for the first time since Monday, on the phone (I'm at work today, and by the time I get to the hospital this evening the doctors will be long gone). It turns out dad has fluid in his lungs, and they will need to drain it, but are slightly worried because of his history of heart problems. They think the pain may be caused by this. I was able to give a full lowdown of dads health issues, minor falls and the fact he has started struggling with swallowing over the past month.

The doctor said that fluid in the lungs can be quite common with those with moderate to severe dementia, and if it's not dealt with it could lead to Pneumonia. They will also be looking in to the swallowing, but he said if it starts to get worse, dad will need to have his diet changed and he said it's not something that is likely to get any better :(
 

AztecCamera87

Registered User
Mar 12, 2019
132
Dad is looking and feeling much better but still gettimg pain in his chest when drinking, he doesnt tell anyome and just sits there in pain quietly. I have mentioned it to nurses. He hasnt been out of except for a brief visit from thde physios and me getting him into the chair for dinners when i visit to assist with his evening meals.

I spoke to staff, for some reason on his record it said he had a hoist at home, i had already explained he didnt to the physio on the phone. He doesn't and can move around with assistance. Im worried whats next, i think him being bed bound can be avoided...
 

AztecCamera87

Registered User
Mar 12, 2019
132
Hospital social worker called this morning to say dad will be discharged today, I had asked if dad had actually been out of bed and moving around with a frame, the answer was no, but he was still fine to be discharged back home, so I'm starting to think my fears of him ending up bed bound at home may end up happening.

I explained that I had been trying to contact social services on a few occasions and nobody has got back to me, as I was worried about my dad's recent spate of minor falls. His answer was,"he has four carer visits a day and you live with him", believe it or not I am aware of that. I am also tired of having to explain my living situation and my girlfriend who I don't live with but help with her caring needs and spend time with when not at work.... This situation seems to be an alien concept to people...

I just realised something.... Nobody at any point has ever asked me if I am able to care for my dad, I'm not... but nobody asks, it's just expected so I try my best. Does this make me a terrible person? Anyway, somehow I've become his primary carer, just through feelings of anxiety and guilt.

Dude, I need to take care of myself.
 

TNJJ

Registered User
May 7, 2019
1,225
cornwall
Hospital social worker called this morning to say dad will be discharged today, I had asked if dad had actually been out of bed and moving around with a frame, the answer was no, but he was still fine to be discharged back home, so I'm starting to think my fears of him ending up bed bound at home may end up happening.

I explained that I had been trying to contact social services on a few occasions and nobody has got back to me, as I was worried about my dad's recent spate of minor falls. His answer was,"he has four carer visits a day and you live with him", believe it or not I am aware of that. I am also tired of having to explain my living situation and my girlfriend who I don't live with but help with her caring needs and spend time with when not at work.... This situation seems to be an alien concept to people...

I just realised something.... Nobody at any point has ever asked me if I am able to care for my dad, I'm not... but nobody asks, it's just expected so I try my best. Does this make me a terrible person? Anyway, somehow I've become his primary carer, just through feelings of anxiety and guilt.

Dude, I need to take care of myself.
I had to step back from dad. I live 18miles away from him and he is 4X a day and no overnight care. Immobile unless with a gutter frame and carer.
Unfortunately it never occurs to them that you might not want to care. I have for a while but ended up stepping back because of carer breakdown. It is not easy but you do need to take care of yourself. Good luck.
 

AztecCamera87

Registered User
Mar 12, 2019
132
Okay, so dad is still in hospital and we had a family meeting on Thursday to discuss care needs. It was surprisingly productive. The adult social worker is now dads social worker and will act as a point of contact. They are changing dad's carer plan which means longer visits during the day, sitting with him during meals, and in theory means more support when i'm at work. I made my worries clear and I felt listened to. The physio who attended, after the meeting, told me it's okay to say no sometimes and if things dont work out this time to really consider dads living arrangements. I think the team who attended seemed to think this was the last roll of the dice, with regards to living at home, at least i felt most were on the same page as me.
 

AztecCamera87

Registered User
Mar 12, 2019
132
Dad's home. The carer wrote they were here for an hour this evening, but i suspect not, didnt give him dinner as he told them he wasnt hungry. Blood sugars still high though, but as he hasnt eaten since being home i made him a sandwich to tie him over.

All day i was getting phonecalls, social worker, ward nurse, discharge team. His Tresiba insulin refil pen has been lost, so i have cartridges with no pen. Great. Medication supposed to include Donepezil, but cant find them anywhere and not in the blister pack. Brilliant. Not that it really seemed to do anything. Once again, great surprise from all when i say im at work and not home til after 7... "oh but you should be home for your dad" said one person... ffs.
 

Rosettastone57

Registered User
Oct 27, 2016
1,169
Dad's home. The carer wrote they were here for an hour this evening, but i suspect not, didnt give him dinner as he told them he wasnt hungry. Blood sugars still high though, but as he hasnt eaten since being home i made him a sandwich to tie him over.

All day i was getting phonecalls, social worker, ward nurse, discharge team. His Tresiba insulin refil pen has been lost, so i have cartridges with no pen. Great. Medication supposed to include Donepezil, but cant find them anywhere and not in the blister pack. Brilliant. Not that it really seemed to do anything. Once again, great surprise from all when i say im at work and not home til after 7... "oh but you should be home for your dad" said one person... ffs.
I'm not surprised by the comments you received. I'm afraid there's an assumption amongst some professionals and others who don't know the situation, that family members "should be doing more ". I lost count of the number of times my husband told people he wasn't going to be a hands on carer. That's not to say that he didn't try to make sure his mother got the support she needed.
 

AztecCamera87

Registered User
Mar 12, 2019
132
Dad has diarrhea today, i have cleaned and changed him 4 times already. His blood sugars have been oddly low all day, so hes been taking in food every couple hours in order to keep his blood sugars up. Any one have experience of this situation? Pwd with diabetes, dementia and diarrhea? Is it normal for the bloods to drop so much?
 

AztecCamera87

Registered User
Mar 12, 2019
132
The diarrhea has been coming and going all week, which is odd, but again nothing really is odd anymore with dad. He has started having involuntary muscle twitches in his arms and legs, i havent said anything to him as hes oblivious to it. I guess its just another symptom. Nothing surprises me.
 

Woo2

Registered User
Apr 30, 2019
1,156
South East
My fil has diabetes , undiagnosed dementia and regular diarrhea, at least once or twice a week for a couple of years now . His blood sugar also dips, no idea why and he refuses to see gp so just carries on. Must be hard for you.
 

AztecCamera87

Registered User
Mar 12, 2019
132
Just a couple of random thoughts....

Dad gets very upset when hes on his own, this can happen in a matter of an hour or two. If i leave the room to do a few chores upstairs and come back he will be visibaly upset. When i say to him im going to work, he will say things like "oh, you dont have to go to work today". Sometimes, i come home from work or seeing my partner and he will have tears building, telling me he was upset because he didnt know where anyone was.

Dad has developed a very child like attitude, finding certain names hilarious, not being able to control himself near food, licking his lips at any glimpse of food. Its cute, but also means i dont eat until after 10pm!

Im finding things quite difficult right now, run down, my partner is going to need her gullbladder removed, due to it becoming deformed, bile building up and causing pain. The doctor was confused as shes "not overweight and still young". Im rushing around everywhere and developing a stinking cold!
 

AztecCamera87

Registered User
Mar 12, 2019
132
Oh, another thing which has annoyed me. The social worker fron the hospital, who informed me and my sister that he would be the point of call from now on, help arrange respite etc, called to say that he is passing dad's case back to the council social workers. I was rather annoyed as i had explained the lack of contact and that they had ignored my calls previously. One of the reasons we felt we could carry on with dads care was because of the things he told us. Once again i feel let down
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,810
Yorkshire
I'm not surprised @AztecCamera87 you're having a tough time and not receiving the support you felt was finally there

you deserve to be able to give due consideration to your partner and to look after your own health

maybe you are reaching crunch time, sadly, that last roll of the dice
 

AztecCamera87

Registered User
Mar 12, 2019
132
Just a few thoughts about recent things happening:

- Council are saying that dad now has too much in savings to qualify for a partial contribution, I'm not certain on the rules here, but he has less than £20,000 in all his accounts, and most importantly we have not been billed for any care. I explained this, but they didn't seem to care, but this figure is going to be in the thousands. We are still awaiting to hear from Occupational Health as we really want to sort out a wash room and other things to make the house safer from dad. We got a letter back in December, saying they will arrange an appointment, but again... nothing so far.

- We are now also trying to sort out falls pads, falls alarm, which again are going to cost... and will likely end up coming out of my bank account. They also seem to be trying to get us to get a new fire alarm and carbon monoxide detector. This seems really pointless as ours work fine, and dad cant walk to to the kitchen unaided anymore and I'm confident he wont accidently put the house on fire.

- I am really trying to save up money so I can start a proper life with my partner, but I am unable and feel guilted that I need to be spending money on dad's care despite him having money himself and nobody really seems to understand my living/life situation no matter how much I explain it. I'm just son who lives with dad.

- Dad has woken up 3 times at over the last week in the middle of the night and tried to get himself out of bed, once resulting in him being mostly on the floor (complicated). I work full time and I really cant be dealing with being woken up and having to reassure dad that it is night time and getting him back to sleep (this takes around half an hour). Dad gets himself back to sleep... I struggle to.

- We are still awaiting on a review of dad's dementia medication as it is not working, I have again failed to get any contact from the memory clinic despite attempting.

Anyway, rant over. Just can't deal with it all
 

Woo2

Registered User
Apr 30, 2019
1,156
South East
I hear you @AztecCamera87 , I don’t really have any suggestions as I have no experience here . Your life is valid and important and you should be able to live your own life without guilt. Ss seem to me to leave you to cope with it while they can , not right but seems par for the course unfortunately . It’s sad you haven’t heard from memory clinic, I am quite lucky In that whenever I have made contact they have offered to come out and reassess Mum . You can only keep Contacting them and hope they get back to you asap. Don’t know what else to suggest . Hope you get some help and answers soon. Take care.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,104
Nottinghamshire
Hi @AztecCamera87 I think the threshold for getting help to pay for care is closer to £25k and you shouldn’t have to use any of your own money to pay for your dad’s care. Perhaps it’s worth calling the Alzheimer’s helpline to see what they can suggest.