ALISONGS' DIARY

[Alisongs]

At my wits' end with a husband who has no capacity for medication and medical decisions, has Diabetes 1, Parkinsons and Parkinson's dementia. He thinks he's fine. Finally getting limited support after 5 years of buck passing as he's too complicated. I hate what dementia is doing to us. I'm 65 he's 67 neither of us has any quality of life. No family no friends noone comes nigh nor by now he's ill. I'll be posting whenever I'm frustrated. Every 5 minutes?

 

[2ndAlto]

As often as you need to @Alisongs, life doesn't sound much fun for you right now.

 

[jennifer1967]

thats a young age to have to deal with all his conditions. it takes its toll. do you have any breaks?

 

[Alisongs]

I hate the dementia. It's hard trying not to hate the bumbling, incommunicative, selfish stranger he has become within 9 months of diagnosis. I just let rip at him this morning. He has to drink double the usual in hot weather to keep blood sugar and ketones down, and keep Parkinsons tremors down, and he also goes really vague and off planet if sugars and ketones are high.
Wants to go to the bank but every time we plan this his blood sugar and ketones go high and we have to wait in for repeat check ups by community nurse, or even get ambulance to hospital. He's packed and bellyaching to go to city before 10am and I keep telling him we won't go until after lunch, and if he doesn't drink we can't go. Won't drink if encouraged, won't drink if left to himself, makes coffees, has a sip, abandons them for me to clean up. Hates tap water. Got him lots of sugar free flavoured water that he has loved for several months. Won't drink it, tastes sweet, there must be sugar in it even though the community nurse reassured him. Won't drink out of the reusable coffee cup he has used for months, because it might have been poisoned by the fruit flavoured water. Has sudden difficulty with flip tops on sports water bottles, so not using. Got 24 twist top water bottles. No, can he have a different kind. Community Matron due any minute and I asked him to help. His reply, I don't help I'm going upstairs...... Told him his fortune. Felt really satisfying. He obviously understood some of it as he's gone to the bedroom to sulk.
Seems like if I start getting things he doesn't want then he'll be happy. I know it's the dementia making him perverse, but there's nothing I can do if he won't cooperate. He seems to enjoy frustrating me

 

[Alisongs]

thats a young age to have to deal with all his conditions. it takes its toll. do you have any breaks?

No. Everyone passed the buck for 5 years as he's too complicated. Some support beginning to be offered after an 8 week stay in hospital. I wasn't coping, refused to do any more. Hospital made him worse!

 

[Alisongs]

As often as you need to @Alisongs, life doesn't sound much fun for you right now.

Won't be any relief until he's incontinent and doesn't know me any more. Getting LPAs in place. He will eventually have to go into a nursing home but currently too young and obstreperous and would use up the savings intended for MY old age. Mum, gran and great gran all lived to be ancient. His family not so much, and his conditions should shorten his life. We were supposed to retire, downsize and travel. I'm lucky if I can get to the shops for an hour. Not a life

 

[2ndAlto]

Sometimes, just sometimes, it feels like a temporary "chemical cosh" would be welcome. I know, I know but honestly...

 

[Alisongs]

Sometimes, just sometimes, it feels like a temporary "chemical cosh" would be welcome. I know, I know but honestly...

In hospital he annoyed the nurses by getting dressed every day and walking round the ward talking to everybody. And asking when he was going home. They put a DOLS on him without my knowledge or involvement or consent, just for that. Lorazepam every night 'for anxiety' but obviously to shut him up as it didn't make it onto the Discharge notes or prescription.

 

[Alisongs]

Community Matron just been. Info about Alcove system. ☑ Prescription for anti saliva medication check ☑ Line up meds timings properly ☑ Consent form for assessment for NHS continuing care.....X..... Oh dear, he waffled and flanneled until she agreed to leave him a copy to look at and sign. Community Nurse to collect tomorrow......Matron did then explain that she would put it through if he didn't sign. He didn't cop on! He has no capacity for medical decisions and had just proved it. If we can swing it he's got 2 As (and a bunch of BS and Cs) so eligible.

 

[2ndAlto]

Alcove system?

 

[Alisongs]

Alcove system?

Video monitor w with big red button. Staff ring to remind him to take his meds and he has to take the meds in front of the screen. Might work with new automated timer pill carousel. Might not

 

[Alisongs]

Just managed to find time for first bath in ten days and he's completely changed out of fresh clothes into others to go to bank in city. He had no idea what he'ddone to original clothes. I found them crumpled in bottom of the wardrobe. Hung them up again. Needs no protein lunch before 1pm meds. Microwave baked potato and Ratatouille. Found he'd put dishwasher on with not much in it. (Just been emptied.) Bus to city 1.40pm. If he hasn't got his buss pass, wallet and phone ready already, he's not going. No time for my lunch

 

[jennifer1967]

Just managed to find time for first bath in ten days and he's completely changed out of fresh clothes into others to go to bank in city. He had no idea what he'ddone to original clothes. I found them crumpled in bottom of the wardrobe. Hung them up again. Needs no protein lunch before 1pm meds. Microwave baked potato and Ratatouille. Found he'd put dishwasher on with not much in it. (Just been emptied.) Bus to city 1.40pm. If he hasn't got his buss pass, wallet and phone ready already, he's not going. No time for my lunch

my husband has all of that in a bag which is ready whenever he goes out. its a mans cross body bag and i just need to make sure he has it. i used to do a check list to make sure he has everything, this is easier being one item.

 

[Alisongs]

my husband has all of that in a bag which is ready whenever he goes out. its a mans cross body bag and i just need to make sure he has it. i used to do a check list to make sure he has everything, this is easier being one item.

My OH is awkward. 😂 Never the same bag, pocket or jacket twice in a row and takes it all out to put away or not at random. Is getting better at doing a check before we go out as I fish out my purse and phone to show him.

 

[Alisongs]

Hooray! OH has been agitating to go to bank to sort out his balance, statements, etc. for three months, both in hospital and after. Done and dusted this afternoon! He actually had very sensible concern. What with Parkinsons as well as dementia, he can't write properly, can't spell reliably, and wants to be able to sign cheques etc., and online and atm banking is too complicated now. (It's been a joint account for convenience since we married 2 years ago). The bank actually has a customer care team we've been referred to for solutions. One really simple solution: They actually do a stamp of your signature that the bank will check and authorise. If I were hospitalised or something, he might be brave enough to get a bus unaccompanied, go to the bank, and ask for help. They were really patient with him, and his conditions are now on record

 

[Izzy]

Wow @Alisongs - that’s really positive news!

 

[cymbid]

Hooray! OH has been agitating to go to bank to sort out his balance, statements, etc. for three months, both in hospital and after. Done and dusted this afternoon! He actually had very sensible concern. What with Parkinsons as well as dementia, he can't write properly, can't spell reliably, and wants to be able to sign cheques etc., and online and atm banking is too complicated now. (It's been a joint account for convenience since we married 2 years ago). The bank actually has a customer care team we've been referred to for solutions. One really simple solution: They actually do a stamp of your signature that the bank will check and authorise. If I were hospitalised or something, he might be brave enough to get a bus unaccompanied, go to the bank, and ask for help. They were really patient with him, and his conditions are now on record

I would suggest opening separate accounts and having what ever monies paid into the relevant account . Then pay x amount a month into the joint account for bills. You could half your present savings now . and put yours away for the future . It wont be used for his care then

 

[RM3]

I would suggest opening separate accounts and having what ever monies paid into the relevant account . Then pay x amount a month into the joint account for bills. You could half your present savings now . and put yours away for the future . It wont be used for his care then

Hooray! OH has been agitating to go to bank to sort out his balance, statements, etc. for three months, both in hospital and after. Done and dusted this afternoon! He actually had very sensible concern. What with Parkinsons as well as dementia, he can't write properly, can't spell reliably, and wants to be able to sign cheques etc., and online and atm banking is too complicated now. (It's been a joint account for convenience since we married 2 years ago). The bank actually has a customer care team we've been referred to for solutions. One really simple solution: They actually do a stamp of your signature that the bank will check and authorise. If I were hospitalised or something, he might be brave enough to get a bus unaccompanied, go to the bank, and ask for help. They were really patient with him, and his conditions are now on record

Hi @Alisongs. I’m glad that after so many challenges (you must be mentally and physically exhausted) the visit to the bank went quite well. Take care x

 

[nitram]

Alcove system?

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[Alisongs]

I would suggest opening separate accounts and having what ever monies paid into the relevant account . Then pay x amount a month into the joint account for bills. You could half your present savings now . and put yours away for the future . It wont be used for his care then

Thank you. Not actually the issue here. He still wants the bank to have a signature from him that they recognise. It's a joint account but only his state pension goes into it.