I have the worst day ever today....

[Margarita]

Please try not to let your wife see how her behaviour affects you. If she refuses to eat her food, take it away. Don`t throw it away, she might decide to eat it later. Just leave it covered within easy access.

If she refuses to eat her food, take it away. Don`t throw it away, she might decide to eat it later. Just leave it covered within easy access.

That what I use to do also, when my mother would also refuse the food I gave her, even thought I had ask her also what she would like to eat then went of made me, but found that later on mum would be asking for it . SO I started keeping it, in the Microwave.

It is a phase and it will pass. All you can try and do is not to react to her negative reactions.

My mother still in that phase 5 years now, I had to bring the carer in to help me when mum needed help with washing. Then saying that everyone with a Demetria is different. So I wonder in why its lasted so long is because mum got Mix Dementia (AZ/ VaD )

Then in the evening so now all verbal is directed at the Cares. Not at me anymore.

With having someone in has helped me cope so much better, even thought mum would love it if no one came in.

All you can try and do is not to react to her negative reactions.

That is so true, very good advice, But I have to think all the time, remind myself . if mum never had this Demetria, she would never be like this , its the symptoms that is making it all worse .

 

[McK]

Coping

Dear llamedos- I've been reading your posts and can understand what you are going through since I've been a 24/7 caregiver for the past 13-16 years. It would be untruthful to tell you that matters will improve,but the reality is that it will continue until your Dr or health care professional will find a med that will help alleviate your anxiety problems. There are no easy answers to all of the complex problems posed by the disease, and as a caregiver, you have to make decisions first of all that ensure that your health, if you choose to continue as the primary caregiver, is of the most importance. Again, you have to make heartwrenching decisions that will affect both your wife and yourself. Not easy! You and your wife and family are in my daily thoughts and prayers-McK

 

[llamedos]

Thanks for all the support

Many thanks to McK, and all members who have given me such support over recent months.

As a recent new member to the forum, and I am very pleased I joined, because I have been through a very distressing, and stressful time recently. Without your constant support, I don 't think I would have survived.

The 'good news' is that I have survived, and back to my 'normal' positive self

Prevously, I mentioned a carer's grant, and there seems to be some confusion over where it comes from, who is entitled, how much you get, and is it a one off payment, or a yearly payment.
I asked my wife's CPN when she visited, but she did not know the answers, but promised to find out for me. My application was supposed to start last September?

Whils't at our home, the CPN was concerned over my wife's general well-being. She has started to look very much 'doped' and has no energy - just wants to sleep all the time. She checked her medication, and was surprised when they were produced - apparently her consultant, and MH dept were not aware of recent changes - effected by her doctor. I said "I thought there would have been a computer link between doctor, and the MH team/" Answer was no - its against the data protection act, and we have no access to GP records - this seems very strange.

In future, I am going to write to my wife's CPN team to inform them of any changes. The consulant was contacted, and her medication [reduced last week] has now been stopped for one drug.
A review will take place tomorrow.

 

[llamedos]

Update, but no progress

Hi Everybody,

Everything STILL in limbo - don't know why I bother!

First - regarding my Time for Carers Grant - still NO progress - despite mentioning to our CPN - My application started last September, but SS worker decided to go on a 4 month course - successor knew nothing about my application - started again with her, and again - NOTHING - finally a letter from her stating she had been trying to contact me by phone, but I was never at home [I'm in the house almost 24/7]. She asked me to contact her if I STILL wanted a carer's assessment! She then told me she no longer had this position, and she would pass me onto her successor - yeah! Still no reponse. Mentioned AGAIN to our CPN - said she would look into it - she did, and brought me two leaflets, and told me to phone the number given!

Secondly - My wife has contantly refused to accept respite care, but after months of me talking to her, she finally said she would go and look around the care home they suggested - GREAT!

Appointment was made for her CPN to take her, but one the day, she rang and said she could NOT take her to view the home, as she had not made a prior appointment....grrrh!!! Later in the day, it was decided that perhaps this particular care home was not even suitable for my wife NOW, my wife is refusing to go and look at any care home - Thanks for nothing!

Meanwhile the wife's medication is up in the air - nether GP or consulant confer with each other - neither can look at each other's records - due to the data protection act! Bottom line is that my wife is NOT getting proper treatment with the most appropriate drugs !

I am repidly losing all faith in the Mental Health Team, and Social Services - they don 't seem to listen to our needs, they don't respond, and often, don't even make notes. They certainly don't confer, or liase with each other - no wonder there is CONFUSION!

 

[living in hope]

Hi
Just to say that my husband consultant always writes to his GP with any changes he wants to the medication and the GP then issues the prescription, this obviously means the GP has all the details and would know if drugs were going to have an adverse effect.
Love
Lorraine

 

[TinaT]

I would phone the consultant's secretary up and make an urgent aappointment. Take the list of drugs or better still, the drugs in their containers to the appointment and ask the consultant to sort them out as you are worried.

Regarding Social Worker and access to direct payments and respite care, again phone and ask for the Line Manager of Elderly Services - she will be the direct boss of whoecver your social worker is and tell her the tale and that you are desperate for help.

Good luck and persevere in the face of all these setbacks.

Regarding your wife's behaviour, I think that you have been given very good advice by posters. I doubt she will starve herself for very long and if you have a spare bedroom and you need a bit of peace, then that's where I would be taking myself. Have to say it wouldn't work in the case of my husband though. I tried it often but he just followed me in and stood by the bed crying, disorientated and in full sundowning mode.

xxTinaT

 

[llamedos]

Back again, but no further progress.

Hi, Back again, but still no real progress - other than my wife's medication has been altered AGAIN! This time by her consultant.

Last week her diazipam [5mg] was reduced from 2 per day to one per day - then later in the week the consultant decided to discontinue diazipam altogether.

Latest alteration today, is to discontinue with haloperidol [anti-phsycotic]. So, now we will have to see if it makes any difference.

Every day she complains about feeling sickly [but not sick], spends all day in her chair sleeping, wants to eat, but when I prepare it for her, she justs picks at it - leaving most of her meal. Last week before the medication was altered she went to bed at 7pm, and slept until 12 noon following day! On the positive side, I also went to bed, and re-charged my batteries too!

She also takes vanlafaxine 150 and 75mg which can also cause sickly feelings - her medication used to be 300mg per day, and it was reduced to 225mg to combat the sickness. Problem is that if her vanlafaxine is reduced further, it could trigger her depression.

Further to my quest for a Social Services Assessment, and grant, I have been told today by our CPN that she has contacted SS, and they have said that my file case has been closed!

I have asked for a person to person appointment at our home to sort this mess out once and for all.....I'm getting more a little p....d off! [sorry]

PS: A culinary question from a mere male doing his best - "Why is it that no matter how much I stir a pan of pasta just before draining - there is ALWAYS one piece left stuck to the bottom of the pan?

 

[Bookworm]

Pasta?

PS: A culinary question from a mere male doing his best - "Why is it that no matter how much I stir a pan of pasta just before draining - there is ALWAYS one piece left stuck to the bottom of the pan?

Suspect a sprinkle of olive oil in water as you start to cook may help, also don't push the cooking too far - al dente will leave the pan less "gooey"......x Mere male sounds as if he is doing great !!

 

[llamedos]

Thanks for the pasta advice

Hi Bookworm,

Many thanks for the pasta advice - will try some olive oil in the pasta next time.

Since my wife's AD I have had to take over gradually as the guy who does the cooking - no problem there, but I have sometimes learnt the hard way!

 

[Vonny]

Many thanks for the pasta advice - will try some olive oil in the pasta next time.

Since my wife's AD I have had to take over gradually as the guy who does the cooking - no problem there, but I have sometimes learnt the hard way!

I will try olive oil also. Tonight I had a good half dozen pieces of pasta stuck to the bottom of the pan

Llamedos, my dad has had to learn cooking, cleaning, hairdressing, chiropody and bra fitting (not on himself ) in the last couple of years and I have to say he's made a grand job of it. Wish my house was that clean and tidy

On a more serious note, I hope the change in meds will make a difference. And very best of luck with SS, it's about time they got their act together.

Vonny xxx

 

[Grannie G]

PS: A culinary question from a mere male doing his best - "Why is it that no matter how much I stir a pan of pasta just before draining - there is ALWAYS one piece left stuck to the bottom of the pan?

There is no need to stir pasta before draining. It should boil fairly rapidly in an uncovered pan of salted water and the action of the boiling water keeps the pasta moving so no need to stir. Stirring causes sticking.

 

[llamedos]

Your dad deserves a medal for all he does!

Hi Vonny,

Your dad seems to be doing a fantastic job

I had a good laugh about your dad's bra-fitting challenge!

Llamedos, my dad has had to learn cooking, cleaning, hairdressing, chiropody and bra fitting (not on himself ) in the last couple of years and I have to say he's made a grand job of it. Wish my house was that clean and tidy

I too had a funny incident a few days ago - my wife has been looking for a new handbag for ages - it had to be bright red - no other would do [don't ask why - I didn't!] THEN a few days ago I was passing a cancer charity shop, and the lady was just putting some new items in the window - and there was the red handbag my wife had been wanting for some time - I went in and bought it - it was as new - perfect in every way - great!

The lady offered to put in a plastic bag for me, and I must admit I have now got into the habit of refusing such bags - my bit for the environment! She said she would STILL put into a plastic bag because I might just draw attention to myself - a male going through town holding a ladies red handbag! I accepted the plastic bag offer, and escaped!

Back to my wife's medication - NOW at last both GP and consulant are listening to me, and sharing information with each other - how long this will last I don't know - time will tell.

All her blood tests have come back as OK - no problems at all.

The good news is that the consulant has now taken her off Diazipam, and haloperidol. So, now she is only on Aricept, and Thyroxine, and Venlafaxine.....only after two days she has become much brighter, less confused, and looks more herself - in fact her doctor stated yesterday, as soon as she saw her, she knew she was much better by the smile on my wife's face - fantastic news - at last!

 

[gigi]

Hello llamedos...

.only after two days she has become much brighter, less confused, and looks more herself - in fact her doctor stated yesterday, as soon as she saw her, she knew she was much better by the smile on my wife's face - fantastic news - at last!

Now that's what I call a success story... You must be so relieved...I'm so pleased for you both!

Love xx

 

[llamedos]

Thanks

Hi Gigi, Many thanks for your message - yes, it has been a great relief - sometimes, I think that less medication is better than more.

My wife is certainly much brighter than before, and has started to look 'normal'again - before she looked very much drugged - always wanting to sleep, no energy, just wanted to sleep in her chair. Today she is very much more alert, but still not active, but it's a start in the right direction.

She is very confused still, and thinks her mother is still alive [died in 1966], and that I am not her husband.

However, I feel much better that her medication has been sorted out properly by both consulant, and GP.

We will have to see how the next few weeks work out.

 

[llamedos]

I'm Back!

Hi Everyone,

After the disaster of our cancelled holiday last May, I re-booked again, and have just returned home from 14 days in the Spanish sun!

The wife was very confused up to, and during the journey, but brightened up when we arrived at the hotel. She did have 2 days when she became violent with me, but I had taken some of her medication her consultant had stopped. Our doctor said it was a good idea to take a small supply - 'just in case'.....glad I did. Within 24 hourse she was back to being much more calm, and started to enjoy herself.....and so did I!

We had 14 days of sun and no rain - I have enjoyed the break - no cooking, shopping, bed making, or anything.....just doing as little as possible. We even went out every night for a drink [or two].

We found a little bar nearby the hotel, and she inisted we go there .... this really relaxed me!

So, its back to the doctors tomorrow, and get her back on her previous drugs.

 

[gigi]

Bravo llamedos....

It's good to hear that you and "the wife" finally got away and enjoyed the break!

Love xx

 

[beech mount]

llamedos,
Well done on your holiday.
Pasta sticks,its a fact of life,why it douse so in a non stick pan beats me.
I now know more about womens cloths than i do about mine,i just worry about what i may wear one of these days!
Best wishes,
John.

 

[connie]

Dear llamedos,

We found a little bar nearby the hotel, and she inisted we go there .... this really relaxed me!

Sounds like you really had a good break. Well done, as I know it is never that easy for the 'carer'.

You wife sounds like my idea of a friend, according to the above quote.

 

[llamedos]

llamedos is back!

Hi everyone,

Last message I left was that we had just returned from Spain - overall, we had a good break, apart from 2 days when my wife became very violent. She has long nails, and I ended up with around 80 puncture wounds - not very nice, and hard to explain!

On the evening we returned [just after my last message] we received news that our nephew had died that evening. You can imagine the effect on my wife, as well as myself.

Before we went on holiday, the wifes' consultant changed her medication to respiridal - so far, no change - the violence continues. She throws everything she can lay her hands on, damaging many things - slams doors until the handles drop off.
Wrote off my lap-top which I have just replaced - then tried to pour coffee over the new one!

It does not seem to matter what I say, or do - it's wrong - I'm in a state of doing anything right.

Good news is that after fighting social services since last September, they have given me a carers' grant of just under £500 - can;t explain how much I appreciate this happening at such a depressing time.

So, life is not good, but at least I'm still thinking positive thoughts, and trying my best in very difficult circumstances

 

[jenniferpa]

Llamedos - forgive me, but do you have a safe room? Somewhere you can go to if she's being violent? When she is like this she isn't the woman you love, and you need to be able to keep your person safe, even if you can't keep your things safe. Perhaps you should go back to the consultant and ask about an increase in medication or another change? I don't think you can afford to hope for the best in a situation like this as if she can move around, she could easily hurt you seriously, and then where would she be?

I am so very sorry to hear about your nephew.