Ratatouille can be eaten cold. OH takes it whichever way, even burnt. Or are you suggesting a flask for the Kir 😂, I'd be paralytic!
ALISONGS' DIARY
- Thread starter Alisongs
- Start date
11 July 5.40am.
Sleeping better than I have done for about a year.... Getting a good 6 hours. Something inside me knows OH is not coming back. OH has left the building and is sliding out of his brain and body. Decline exacerbated by hospital stays.
I hope OH will soon be at the point where he is where he is, and he is how he is, and what used to be is just what used to be.
So many tears. (Mine.)
He was already unaware of, and then accepting of, missing our second anniversary in April, and my birthday in May, during his first hospital stay. He's always been rubbish at dates, names and faces, but he knew me yesterday, after ten days apart.
Familiarity still breeds content.
I'll visit before lunch today. Got house repairs tomorrow. OH can get niggly if I stay too long, as he tires easily. Newspaper, fruit squash, retrieve his best shoes to prevent loss.
Waiting for a reply from the Admiral Nurse as to what to start doing and when.
I wish the hospital wasn't a two hour commute each way. It is likely to be the same for any nursing home.
My marriage is over. Don't tell me it's just changed. Dementia is forcing us apart. I'm neither wife, nor widow, nor divorcee, nor single. My identity is dementia
*
2.40pm
Seen OH. He's OK. Had to remind him he'll be going to a 'convalescent' home soon to stabilise his blood sugars, not before next week.
Flipping catering assistants still give him biscuits with coffee after meals so sugar can't stabilise!
Took home the spares I found, and his best track shoes. Have raised biscuits issue with ward matron. OH has a dementia sign and a low sugar sign over his bed and can't even remember to drink extra if his blood sugars are high. So he drank 2 cups while I was there. Not visiting tomorrow, electrician coming to change some sockets
*
7pm
Texted Admiral Nurse yesterday for some idea of best next steps. There are so many as OH has so many complications!
Today I remembered to text the Community Matron about getting on with OH's medical assessment for NHSCC funding. He could have more than 3 possible As now....
Sleeping better than I have done for about a year.... Getting a good 6 hours. Something inside me knows OH is not coming back. OH has left the building and is sliding out of his brain and body. Decline exacerbated by hospital stays.
I hope OH will soon be at the point where he is where he is, and he is how he is, and what used to be is just what used to be.
So many tears. (Mine.)
He was already unaware of, and then accepting of, missing our second anniversary in April, and my birthday in May, during his first hospital stay. He's always been rubbish at dates, names and faces, but he knew me yesterday, after ten days apart.
Familiarity still breeds content.
I'll visit before lunch today. Got house repairs tomorrow. OH can get niggly if I stay too long, as he tires easily. Newspaper, fruit squash, retrieve his best shoes to prevent loss.
Waiting for a reply from the Admiral Nurse as to what to start doing and when.
I wish the hospital wasn't a two hour commute each way. It is likely to be the same for any nursing home.
My marriage is over. Don't tell me it's just changed. Dementia is forcing us apart. I'm neither wife, nor widow, nor divorcee, nor single. My identity is dementia
*
2.40pm
Seen OH. He's OK. Had to remind him he'll be going to a 'convalescent' home soon to stabilise his blood sugars, not before next week.
Flipping catering assistants still give him biscuits with coffee after meals so sugar can't stabilise!
Took home the spares I found, and his best track shoes. Have raised biscuits issue with ward matron. OH has a dementia sign and a low sugar sign over his bed and can't even remember to drink extra if his blood sugars are high. So he drank 2 cups while I was there. Not visiting tomorrow, electrician coming to change some sockets
*
7pm
Texted Admiral Nurse yesterday for some idea of best next steps. There are so many as OH has so many complications!
Today I remembered to text the Community Matron about getting on with OH's medical assessment for NHSCC funding. He could have more than 3 possible As now....
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12 July 7.30am. Electrician now due after lunch. Sister maintaining silence on mums probate and house sale, and everything else. I am still co executor and Co legatee, have not signed a formal renunciation that I have stepped back as executor, with reserved rights. Sister should be keeping me informed. And sending my I D docs back, which I have now requested. She's had them a week. If solicitor has to keep them for exchange and final house sale, it would be nice to know. Whichever way you look at it, a stepped back executor with reserved rights, legally still needs to be kept informed. Not holding my breath.
Sister's reply :Not sent yet. Not managed to get to a post office......
Grrrrrrrrrrr etc. Post Office just by sister's grandchildrens' school. 3 minutes by car. (Reminded her. She seems to forget we BOTH grew up in the area and I can see it on Google Maps.) Sister does the school run.. And I sent money for docs to be returned Special Delivery. I had a 20 minute bus journey to/from Post Office. I do have house sale solicitor's details. Will contact them next week if no joy, to chase with sister! I fell over myself to get the paperwork (and Id) sent to her the same day I got them, and they arrived next day. Inconsiderate, inept, and a few other choice words I'm too stressed to think of!
*
Community Matron rang to say she supports getting medial needs funding assessment done as soon as OH in nursing home.
*
Sister's reply :Not sent yet. Not managed to get to a post office......
Grrrrrrrrrrr etc. Post Office just by sister's grandchildrens' school. 3 minutes by car. (Reminded her. She seems to forget we BOTH grew up in the area and I can see it on Google Maps.) Sister does the school run.. And I sent money for docs to be returned Special Delivery. I had a 20 minute bus journey to/from Post Office. I do have house sale solicitor's details. Will contact them next week if no joy, to chase with sister! I fell over myself to get the paperwork (and Id) sent to her the same day I got them, and they arrived next day. Inconsiderate, inept, and a few other choice words I'm too stressed to think of!
*
Community Matron rang to say she supports getting medial needs funding assessment done as soon as OH in nursing home.
*
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12 July pm
As suspected, electrician delayed. New date 23 July. I've been dozing all morning. So OH won't be getting any progress pictures tomorrow. And now the weather looks as though it's going to tip it down. Everything in life moving at snails pace 🐌
As suspected, electrician delayed. New date 23 July. I've been dozing all morning. So OH won't be getting any progress pictures tomorrow. And now the weather looks as though it's going to tip it down. Everything in life moving at snails pace 🐌
Fingers crossed the house sale doesn’t fall through with all the delays, must be irritating the purchasers. No what you mean about workmen’s delays. We were waiting all morning for vacuum cleaner repair guy - turns up and the part that had been sent for job not correct- OH in particular very annoyed.
I've just emailed Diabetes Lead Consultant for NHS England about Bill's predicament. He was super helpful last year when surgery was trying to withhold a replacement prescription for diabetic kit that had broken down. Just trying to get best advice really.
Kiroclock 🍹
Kiroclock 🍹
Saturday 13 July
OH won't be shipped off anywhere at the weekend. Discharge coordinator rang yesterday evening to confirm this. She's lovely. I just find living in Dementialimboland does my head in, as the saying goes. I thrive on routine, procedure and protocol, and trying to find out what was or is protocol, invention or illegal about OH's care was or is not remotely entertaining. Most male medical staff seem to get that. Patronising, empty reassurances, especially from admin, cleaning, catering and security staff doesn't cut it. The health care assistants are not allowed to comment. The nurses don't have time, or so it seems.
Will visit OH before lunch today. Works best. We're both less tired, there's less of a hole punched through the day, and he has lunch to distract him as I leave. Newspaper, fruit squash.....Not visiting Sunday. I hate this. Neither of us is living.
*
Not taking OH any toiletries. He doesn't seem to have missed them. Saves the anguish and expense of losing them on daily basis. Not sustainable when his preferred razor costs a tenner, never mind the blades. Someone is shaving him, and he is being showered. His refusal to shower unprompted is only because he has always bathed. His hair looks combed and still short enough. He needs the dentist for his broken tooth. All I can do for dental hygiene is make him drink a lot. Dental appointment keeps being postponed. Waste of a dental plan but no NHS locally
*
So what can I do with myself once OH is locked away? I used to think I'd volunteer with animals but there's nowhere convenient locally
*
At this rate I'm going to end up fat, miserable, drunk, broke and alone. Trying to be positive but OH will be locked away until brittle diabetes or frustration kill him. So I bought him more jogging pants and trainers.
So conflicted, as the Americans say. I am just not convinced that living longer is in OH's best interests. The man I married would be horrified at the fate he's having inflicted on him
*
3pm
Still trying my best..... Bill very very shakey, could not get dressed today. Parkinsons meds need to be delivered promptly and regularly. Noticed on first visit that 1pm dose not on chart over bed, and 10am put as 11am instead. Queried it today, as would mean wrong dosage for the past two weeks...... Yup, unfortunately I'm right again..... Chart altered, 10am dose given at 10.30am...... After the Best Interests Meeting my concerns are being taken seriously, as I've obviously done my research.
Still not convinced that rotting in a nursing home just to take Parkinsons meds and insulin jabs is the best outcome
Taken 2.5 hours to get back home due to busses missing.... Grrrrr
Sister has sent my ID back special delivery. Better late than never 🐌
And I got a tax rebate😁
*
National Specialty Advisor for Diabetes with NHS England has replied very promptly and sympathetically, which is typical. Gotta love the guy! He has suggested I ask the diabetes team for a full review......I will if I can get hold of them... No names, emails or direct phone numbers. I can email the National Specialty Advisor for Diabetes with NHS England and get an immediate reply on a Saturday, but have no way of contacting the local team direct on weekdays, let alone weekends. Mountains were moved in many directions last time I contacted the Prof, and not by me..... 🦶⛰️
OH won't be shipped off anywhere at the weekend. Discharge coordinator rang yesterday evening to confirm this. She's lovely. I just find living in Dementialimboland does my head in, as the saying goes. I thrive on routine, procedure and protocol, and trying to find out what was or is protocol, invention or illegal about OH's care was or is not remotely entertaining. Most male medical staff seem to get that. Patronising, empty reassurances, especially from admin, cleaning, catering and security staff doesn't cut it. The health care assistants are not allowed to comment. The nurses don't have time, or so it seems.
Will visit OH before lunch today. Works best. We're both less tired, there's less of a hole punched through the day, and he has lunch to distract him as I leave. Newspaper, fruit squash.....Not visiting Sunday. I hate this. Neither of us is living.
*
Not taking OH any toiletries. He doesn't seem to have missed them. Saves the anguish and expense of losing them on daily basis. Not sustainable when his preferred razor costs a tenner, never mind the blades. Someone is shaving him, and he is being showered. His refusal to shower unprompted is only because he has always bathed. His hair looks combed and still short enough. He needs the dentist for his broken tooth. All I can do for dental hygiene is make him drink a lot. Dental appointment keeps being postponed. Waste of a dental plan but no NHS locally
*
So what can I do with myself once OH is locked away? I used to think I'd volunteer with animals but there's nowhere convenient locally
*
At this rate I'm going to end up fat, miserable, drunk, broke and alone. Trying to be positive but OH will be locked away until brittle diabetes or frustration kill him. So I bought him more jogging pants and trainers.
So conflicted, as the Americans say. I am just not convinced that living longer is in OH's best interests. The man I married would be horrified at the fate he's having inflicted on him
*
3pm
Still trying my best..... Bill very very shakey, could not get dressed today. Parkinsons meds need to be delivered promptly and regularly. Noticed on first visit that 1pm dose not on chart over bed, and 10am put as 11am instead. Queried it today, as would mean wrong dosage for the past two weeks...... Yup, unfortunately I'm right again..... Chart altered, 10am dose given at 10.30am...... After the Best Interests Meeting my concerns are being taken seriously, as I've obviously done my research.
Still not convinced that rotting in a nursing home just to take Parkinsons meds and insulin jabs is the best outcome
Taken 2.5 hours to get back home due to busses missing.... Grrrrr
Sister has sent my ID back special delivery. Better late than never 🐌
And I got a tax rebate😁
*
National Specialty Advisor for Diabetes with NHS England has replied very promptly and sympathetically, which is typical. Gotta love the guy! He has suggested I ask the diabetes team for a full review......I will if I can get hold of them... No names, emails or direct phone numbers. I can email the National Specialty Advisor for Diabetes with NHS England and get an immediate reply on a Saturday, but have no way of contacting the local team direct on weekdays, let alone weekends. Mountains were moved in many directions last time I contacted the Prof, and not by me..... 🦶⛰️
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Sunday 14 July
Shower door was 'fixed' a few weeks back after 5 years. (Drainage strip at inside bottom of door popped back in. Upside down, but that's life.....) Instant hot water still works, shower head not blocked, and bottom drainage strip is directing runoff inside the shower. I can shower quickly and cheaply without having the mains hot water on. Trying to get as many plusses out of this as I can think of.
Not visiting OH today. He's got fresh clothes. He's got drinks. He's now got the proper dosages of his Parkinsons meds.
***
Shower door was 'fixed' a few weeks back after 5 years. (Drainage strip at inside bottom of door popped back in. Upside down, but that's life.....) Instant hot water still works, shower head not blocked, and bottom drainage strip is directing runoff inside the shower. I can shower quickly and cheaply without having the mains hot water on. Trying to get as many plusses out of this as I can think of.
Not visiting OH today. He's got fresh clothes. He's got drinks. He's now got the proper dosages of his Parkinsons meds.
***
Hope you have a restful day with many plusses. Funny how small things like having a decent shower can begin to feel like a luxury.
Shower door strip popping off and OH just stopping us using the shower instead of fixing it or getting it fixed was a Parkinsons / dementia precursor. He just got more and more pig headed. At least I can try to get things fixed now, in between doing everything else, visiting him and being badgered about legals, financials and future care. I am going to go into the city and try to forget. Hope third party footymania doesn't get in my way.
14 July 8am
Signed up to Millennium Library What's On newsletter. OH used to work all weekend every weekend (only 4 years ago!) and I used to go out and about a lot on my own. There was so much we were planning on doing together once we both retired. I'm not State pension age yet, and OH will be locked up in a nursing home. He's currently oblivious. I have to swallow the bitterness every day for both of us
Signed up to Millennium Library What's On newsletter. OH used to work all weekend every weekend (only 4 years ago!) and I used to go out and about a lot on my own. There was so much we were planning on doing together once we both retired. I'm not State pension age yet, and OH will be locked up in a nursing home. He's currently oblivious. I have to swallow the bitterness every day for both of us
@Alisongs , please ,please try to accept your new situation. You will be truly unhappy forever unless you do. My OH was diagnosed the summer I retired and this was definitely not what we had planned. All retirement dreams of holidays and relaxing shattered .
But .. I learnt to accept the situation, to stop thinking of what could have been, to stop looking at others who were living a good retirement and accept as things are. . it made a world of difference to my mental health. I now try to see only positives and ignore negative feelings otherwise I'd break .
Wishing you strength to face your new life x
But .. I learnt to accept the situation, to stop thinking of what could have been, to stop looking at others who were living a good retirement and accept as things are. . it made a world of difference to my mental health. I now try to see only positives and ignore negative feelings otherwise I'd break .
Wishing you strength to face your new life x
I agree with Maggie but it's easy to say and not necessarily that easy to do, I'm sat here alone on my boat in the marina and I don't mind admitting it I'm lonely.
I've been posting on here for over 10 years now as my wife got early onset too, had to give up work at 50, it's just not what you planned for or expected being alone. K
I've been posting on here for over 10 years now as my wife got early onset too, had to give up work at 50, it's just not what you planned for or expected being alone. K
If only the Limboland would stop. I cannot do anything or plan anything until OH's final destination is settled. By others.....
I have nothing to hold onto.
Somehow the half eggshell from a wild bird, that I just found by the birdbath in the garden seems like a symbol of hope of something or other.
It goes with the empty bird's nest I found on the back doorstep on my birthday many years ago. I'm keeping them.
The only friend that visits is a brain damaged lady blackbird, who shows no fear and potters round the garden eating the strawberries
I have nothing to hold onto.
Somehow the half eggshell from a wild bird, that I just found by the birdbath in the garden seems like a symbol of hope of something or other.
It goes with the empty bird's nest I found on the back doorstep on my birthday many years ago. I'm keeping them.
The only friend that visits is a brain damaged lady blackbird, who shows no fear and potters round the garden eating the strawberries
It's been too fast. Three years from Parkinsons diagnosis to incarceration in a nursing home. Just over 2 years since our wedding. OH is more accepting as his memory is going
@Alisongs We had planned on touring France, each summer. it's only three years since my OH diagnosis and my OH is double Incontinent, and needs a wheelchair.,now He ,too us speeding towards full time care. Sadly ,some people's decline is fast !
It's obvious how difficult you are finding all of this and I wish I could offer a way to deal with it. Try not to be so negative , incarceration? Bitterness pill?
I truly know how easy it is to say and difficult to do. I trod the path! I hope you can find some peace x
It's obvious how difficult you are finding all of this and I wish I could offer a way to deal with it. Try not to be so negative , incarceration? Bitterness pill?
I truly know how easy it is to say and difficult to do. I trod the path! I hope you can find some peace x
