ALISONGS' DIARY

Violet Jane

Registered User
Aug 23, 2021
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Your husband's Diabetes seems to be very unstable. I doubt that two daily visits by district nurses will be able to manage it if his blood sugar needs to be measured and his insulin adjusted frequently throughout the day. Many people with Diabetes can manage it on their own if they don't have Dementia.

Perhaps you should apply for Continuing Health Care.
 

Alisongs

Registered User
May 17, 2024
709
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Lots of emails and texts sent out. Feeling more positive for having taken action. The control may be illusory, but Bill is just not ready for a nursing home yet. When he is, will be soon enough
 

sdmhred

Registered User
Jan 26, 2022
2,653
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Surrey
Oh @Alisongs I empathise with you. You’re between a rock and a hard place 😢😢 Life is certainly very (insert swear word of your choice) when dementia is involved. At least ensure the Best Interests Meeting is at your convenience!
 

Alisongs

Registered User
May 17, 2024
709
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Oh @Alisongs I empathise with you. You’re between a rock and a hard place 😢😢 Life is certainly very (insert swear word of your choice) when dementia is involved. At least ensure the Best Interests Meeting is at your convenience!
Hardly likely. Long awaited house repairs due this week. Not sure when they're coming, arranged when OH was expecting to be home to stay. He loved the male bonding and discussing the techy bits when the guy spent a whole day with us last month.
That won't happen in a nursing home. He's just not ready for a nursing home, and we had been getting into a routine and getting him stimulated. All gone to pot....
I did firmly indicate (OK, shouted) to social worker to convene at my house Saturday , yesterday, but he wasn't having any. Why on earth ring at 5 on a Friday except to deliberately frustrate any help or advice from other hospital departments. Is it any wonder I was and am depressed and suicidal. Most hospital staff are very blinkered and arrogant. Or assault you (Security!)
Only Dementia Support Workers and Palliative Care really try to help the families
PS M and S Bucks Fizz with almost no alcohol has been a good thing today
PPS. Having sent loads of emaills, got a sympathetic reply and advice and support from Rory Cellan Jones of the Movers and Shakers blog.
Tried the Parkinsons forum but it is so poorly laid out now, as to be useless.
 
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Alisongs

Registered User
May 17, 2024
709
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Monday 8 July 1.30am
Two hours sleep, nightmares.
Jerked awake. Wringing wet with sweat, palpitations, knot in my chest, stomach churning, tinnitus so loud I've gone deaf. Constant fight or flight anxiety. If OH goes into a nursing home, I'll comply with the bare minimum. Then I'm gone
 
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Alisongs

Registered User
May 17, 2024
709
0
Monday 8 July 2.30am.
OH still has legal and financial capacity. What happens if he refuses to share legal or financial information? I cannot give it on his behalf and no obligation to share anything of mine.
OH certainly still has conjugal capacity. We both have conjugal rights. How can these be claimed at our convenience if he's on a DOLS in a nursing home? We both have a right to family life.
I shall be asking at the Best Interests Meeting. My rights are being eroded and I am already taking legal advice.
 

Alisongs

Registered User
May 17, 2024
709
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Stinking headache. Exhausted. On the verge of giving in to Hospital bullying. If incarcerated in a nursing home, OH will die of misery and frustration anyway. Probably the best outcome
 

Alisongs

Registered User
May 17, 2024
709
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My life really does fall into two separate halves. HMRC owe me a four figure sum for overpaid tax on a pension lump sum paid last year!
 

Alisongs

Registered User
May 17, 2024
709
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Just found out about John's Campaign in another post. Protocol giving carers and family the right to stay overnight in hospital with the dementia victim. I was told this was definitely not allowed. Another breach of trust and truth.....
 

My Mum's Daughter

Registered User
Feb 8, 2020
773
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Just found out about John's Campaign in another post. Protocol giving carers and family the right to stay overnight in hospital with the dementia victim. I was told this was definitely not allowed. Another breach of trust and truth.....
Not necessarily, you'd need to find out if the hospital has signed up for the scheme. Some hospitals have signed but are piloting on a limited number of wards.

It's also worth considering if staying overnight is in the PWD's best interest. Wards can be extremely busy and noisy overnight so you'd need to consider how well you operate when sleep deprived. In our case, Mum is very deaf so would sleep through pretty much anything however, the same doesn't apply to me.

Unfortunately, history has shown that I don't cope well without my sleep so if in that position, I wouldn't stay unless there was threat to Mum's life.

 

Alisongs

Registered User
May 17, 2024
709
0
Not necessarily, you'd need to find out if the hospital has signed up for the scheme. Some hospitals have signed but are piloting on a limited number of wards.

It's also worth considering if staying overnight is in the PWD's best interest. Wards can be extremely busy and noisy overnight so you'd need to consider how well you operate when sleep deprived. In our case, Mum is very deaf so would sleep through pretty much anything however, the same doesn't apply to me.

Unfortunately, history has shown that I don't cope well without my sleep so if in that position, I wouldn't stay unless there was threat to Mum's life.

My husband was given Lorazepam on the ward for "anxiety". It didn't make it onto his discharge notes or prescription, but is used for insomnia. With the result that he was only ever half awake, or asleep all day.....
 

My Mum's Daughter

Registered User
Feb 8, 2020
773
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My husband was given Lorazepam on the ward for "anxiety". It didn't make it onto his discharge notes or prescription, but is used for insomnia. With the result that he was only ever half awake, or asleep all day.....
Lorazepam is usually only prescribed for short term or occasional use. Mum is much further advanced than your husband and has a prescription for when she's extremely distressed. Over the years, I found other ways of calming so we rarely need resort to medication.

It's a very strong medication and the smallest dose can send the patient into a deep sleep within 20-30 minutes.
 

Alisongs

Registered User
May 17, 2024
709
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Lorazepam is usually only prescribed for short term or occasional use. Mum is much further advanced than your husband and has a prescription for when she's extremely distressed. Over the years, I found other ways of calming so we rarely need resort to medication.

It's a very strong medication and the smallest dose can send the patient into a deep sleep within 20-30 minutes.
Sounds like it was inappropriate in my OH's case