The Golden Routine

[Flashie]

I have posted ref OH having dementia. She diagnosised last November and in January we have added Motor Neurone Disease as well now. The third is not "a disease" I call it the Golden Routine. This is OH daily routine in her head that everything is comfortable, say good morning/night, there is nothing wrong with me and that She does not need outside help "Hubble does that for me".

Dementia does not help with Motor Neurone (MND) especially if you have to cope with UTI as well. She has had some falls, 2 were a & e jobs head bleeding wounds. Again this was not waking me to help in the night.

The reason for post is does anyone care for someone with a set routine which is in their minds and not the carer? And yes we have carer for 30mins a day to try and get caring by others into the routine, only works if I am there.

Also GP has set up meeting with Dementia people, MND help and hopefully care management to see if they have way forward for my sake as well as OH.

Any knowledge would be a help.

 

[Shedrech]

Hi Flashie
what a lot you have on your plate - so I'm so glad that you are being supported by your GP and others
I'm sorry not to be able to offer any advice as this is outside my experience - however in a previous post you mentioned that you keep a regular record to help you remember details of your OH's condition, so do share this with the medics at the meeting so that they have a good idea of your concerns - it's really useful that you have evidence to back up the points you want to make
I know it was tough at times with my dad, when he was at home, to get him to let the carers support him - sometimes he too said he was OK because his daughter (me) helped him - at those times we'd either back off and try again later or just let him be as it wasn't worth keeping on at him and have him become anxious and stroppy; that got us nowhere - not quite the same as your concern, though
do let us know how the meeting goes
best wishes

 

[Flashie]

Thanks Shedrech
We have tried the backing off when OH don't want help. They say that the routine could of started when OH realised she was forgetting things and this was her way of remember what had to be done. The other part of it is her thanking them for working and still being there. It's hard to work out where we are with the dementia.

 

[Shedrech]

Hi Flashie

It's hard to work out where we are with the dementia.

ain't that the truth!
slippery creature, isn't it (oops - dementia, not your OH - sorry)
much sympathy

 

[Flashie]

Hi Shedrech

Well since posting the original, have had all the signs of a UTI but tests showed no infection.

The meeting yesterday with GP, Dementia Dr and MND rep was called by the GP as she had not had a case where MND and Dementia were involved and nor had the others. When updated them with OH condition the GP sent someone round after meeting but they can not find any medical reason for the poor health and dementia change. Trying same antibiotics to see if it will work like last time.

They discussed the present and the future about OH and how best to go. They are all more concerned for me as they say I have lost weight and on a high antidepressant add in no sleep the night before with 2 x incontancies. They managed to get care management to give a 2hr for sat/sun and to look for emergency respite. That would give me a break and if OH still not right the excuse for and check her over.

Now have a second named GP to contact if required (they have been good since start) with MND and dementia support as we have now.

The official diagnosis is that MND and Front Lobal dementia happened at same time. This is rare but happens sometimes with the MND.

I now have piece of mind but need the extra care now as have had to say I PUT MY HAND UP. We as carers have the job full time if you are living with patient.

Thanks for listening as feel this site is good, you can talk to carers in same position.

 

[Casbow]

Hi Shedrech

Well since posting the original, have had all the signs of a UTI but tests showed no infection.

The meeting yesterday with GP, Dementia Dr and MND rep was called by the GP as she had not had a case where MND and Dementia were involved and nor had the others. When updated them with OH condition the GP sent someone round after meeting but they can not find any medical reason for the poor health and dementia change. Trying same antibiotics to see if it will work like last time.

They discussed the present and the future about OH and how best to go. They are all more concerned for me as they say I have lost weight and on a high antidepressant add in no sleep the night before with 2 x incontancies. They managed to get care management to give a 2hr for sat/sun and to look for emergency respite. That would give me a break and if OH still not right the excuse for and check her over.

Now have a second named GP to contact if required (they have been good since start) with MND and dementia support as we have now.

The official diagnosis is that MND and Front Lobal dementia happened at same time. This is rare but happens sometimes with the MND.

I now have piece of mind but need the extra care now as have had to say I PUT MY HAND UP. We as carers have the job full time if you are living with patient.

Thanks for listening as feel this site is good, you can talk to carers in same position.

When I read what is happening to other people I feel ashamed that I am so unhappy with my lot. You all seem to have more to cope with than is fair or even possible. I feel for you all and wish I could help. Love to youxx

 

[2jays]

I have my own golden rules, not always followed


Rule 1) Stop thinking others on TP have it worse than you

Rule 2) remember everyone who is a part of TP has it hard.

Rule 3) remember someone's easy.... Is another someone's hard

 

[Casbow]

I have my own golden rules, not always followed


Rule 1) Stop thinking others on TP have it worse than you

Rule 2) remember everyone who is a part of TP has it hard.

Rule 3) remember someone's easy.... Is another someone's hard

Thats me toldx

 

[esmeralda]

Well said 2jays, good advice for all of us. You are a very kind person Casbow, and just as important as anyone else on TP. Love, Es
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[2jays]

Thats me toldx

Sorry I forgot the hugs. We all need hugs xxxxxx

I'm one of the worst for thinking I've got it easy...... xxxxxxxxxxzz

 

[Flashie]

Thankyou everyone. My definition of dementia.

The person we care for has a terrible disease caleed "Dementia", but it is us the carers that have the "Symptoms" as we react to everything they do in different ways, which causes us stress, lack of sleep etc.

No one on TP has it easy, all people with the dementia are different and we have our problems with. I feel sometimes reading TP that others are worse off than me.

Thanks again Flashie

 

[LYN T]

Casbow-I'm going to tell you off!!!!!! All Carers have a difficult time Every PWD has a terrible time. There is NOTHING good about Dementia. So STOP thinking that you have an easier time than others. Telling off over

Flashie, I'm sorry that your OH has a dual diagnosis. My late Husband was diagnosed with Alzheimer's and Bi polar at the same time. Pete's Consultant explained that brain damage can cause other neurological problems depending on where the damage occurs. A few months before Pete passed he was also diagnosed with Parkinson's disease and prostate Cancer. At one stage, before Pete went to the CH, I was finding it difficult to know what was the biggest problem.

You have my sympathy and I hope that you will be given plenty of support by the medical team. If you want to rant/be sad/or ask for information post here. There will always be someone to help you.

Take care

Lyn T XX

 

[canary]

My OH has FTD and motor problems.
He compensates for his memory problems by reducing everything to a set of rules as he can memorise the rules, even though he cant remember what actually happened. The problem is that the rules dont always work, but he insists that they have to continue as otherwise he gets too anxious.
This reducing things to a set of rules is very common with FTD. FTD is also very commonly associated with MND - does she have FTD?

 

[Flashie]

My OH has FTD and motor problems.
He compensates for his memory problems by reducing everything to a set of rules as he can memorise the rules, even though he cant remember what actually happened. The problem is that the rules dont always work, but he insists that they have to continue as otherwise he gets too anxious.
This reducing things to a set of rules is very common with FTD. FTD is also very commonly associated with MND - does she have FTD?

If FTD Its the dementia associated with MND, the answer is yes. I would call OH's routine the same, this they are using Sertraline to help to by-pass some of it, working in that sense. Things to be comfortable and will see them she is next there. It this routine that drives me mad as she is talking to them at same time. Tablets now take 15mins to take as they are told what there for and where to go. Can remember this like a record but most other thing come and go.

 

[canary]

I have just noticed that you said that the MND came on at the same time as "frontal lobe dementia", so yes - this is FTD.
Have you seen this factsheet?
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=167

 

[Flashie]

I have just noticed that you said that the MND came on at the same time as "frontal lobe dementia", so yes - this is FTD.
Have you seen this factsheet?


Thanks Canary, this explains a lot of what I am seeing. Yet short term memory is very bad.