Oh brother

[Tin]

Thanks Ann, some things are there. We have a gp appointment next Tuesday. At moment mum is only on Anti depressants, we have heard nothing about dementia medications yet, maybe they found something in blood tests.

The chatter started really early this morning, I was hardly out of bed and she is standing there telling me that she feels the same???? Sundowning and pestering the dog has started early too. she has wrapped the dog up in blankets and telling her they have to go, poor dog just grumbling under the blanket. continually asking for cigarettes. We have not been out yet, hoping when we do it will stop all this.

 

[Tin]

Massive anxiety/sundowning from this morning seems to have stopped, dog is now 'hiding' behind me on sofa, well actually hiding behind a cat that is sitting behind me and I am perched on the edge of the sofa typing this.

Started leaving the car unlocked last week in the hope that this would stop mum going to the gate and talking to imaginary bin man. It has worked but as usual each solution brings a new set of problems. The postman has been handing post to her, he never did this when she was standing on guard at the gate. Today I found a lot of brown envelopes under the front seat! She has also been taking things to the car: plates, cups, towels and pillows. Mum in house, front door now locked, raining and windy here, don't want her outside or even sitting in the car.

 

[Tin]

Like 2nd May, another horrible day full of anxiety, started at 2pm just full of restlessness and the leaning to one side has returned. Mum could not walk through a doorway without banging her hip on one side or bumping her head on the other. This leaning condition is becoming more and more frequent, especially on days like today. Definitely put it on my list of things to discuss with gp next week. Imaginary conversations on the telephone are back too - always to my brother demanding he comes to visit. What I find incredible when she has these conversations are the reasons she gives for him to visit asap, today was that the dog needed to go to the vets as she has a lump on her head, she doesn't, its just a matted piece of hair, scissors sorted that one out and there is the one about the garden wall falling down and he has to come and fix immediately, or the car won't start. Then we finally get the one about wanting to go home.

Living with this illness I have not been too aware of the deterioration day to day, just changes in her that have required some adjustments on how we do things but the last 2 weeks I have noticed a lot of massive changes, not blips, but changes that are here to stay and because of this restlessness she looks so tired. Its 8pm light outside and mum is still out there, every couple of minutes she walks passed the window, will bring her in soon, warm bath with Lavender, up the Lavender air fresheners and just hope for a quiet night.

And I have just remembered we were supposed to vote for something today, can't do it now.

 

[Ann Mac]

Hi Tin,

It sounds like you are having an awful time at the moment I wish you had a CPN or SW that you were able to access for support - I find it unbelievable that you, and so many others seem to be just left to get on with it. I may have to scream and shout at times, but at least I do have someone 'named' and familiar in the form of Mil's CPN, as a starting point.

We have issues with Mil 'leaning', but from your description, it sounds different to what your Mum is doing - Mil tends to lean forward, almost at a 'tilt' and walking with tiny, fast, 'shuffly' steps - it almost looks like her feet are rushing to catch up with her head, and obviously a big danager with her overbalancing and falling. She can sort of 'list' to the side, leaning slightly to the right, its but more that she seems not to be able to walk in a straight line and veers off instead. Its intermittant (though seen more and more frequently as time goes on) and the more agitated she is, the more she paces, the worse it gets. Consultants views vary - one says she has Parkinsons, another says no, the dementia is just causing her to display 'Parkinson like symptoms, including Parkingsons gait'. Either way, I don't think that's like what you are describing with your Mum, is it?

I do, however, know exactly what you mean about the creative 'reasons' - with Mil it isn't on the phone wanting someone to visit, its the reasons she gives for why she has to go 'home, right now' - its because her Dad is ill and she has to see how he is, its because her parents are expecting her, her Mum will have a meal ready, her parents will be worried, her parents/Auntie/nephew are looking after her little one and she has to get back, she has left a child there alone and must get back, she has a cat there that needs feeding or a dog that needs walking, she has left all her clothes there, her friends are meeting her there, her nephew is picking her up from there, she has left all her money there . . . the list is endless. And I am never 100% sure to what extent she is aware that she is 'making up' reasons for having to leave. Sometimes I feel she guenuinely beleives that her parents are worried or that she has a child 'at home' who needs her - but occasionally, whilst I think the desire to go home is very real, I suspect that she 'makes up' the excuses simply hoping to persuade us to take her. Either way, the variety and sheer inventiveness is amazing!

I can also relate to the periods of time where changes and decline are rapid, big and very noticable

I really hope that the lavender helped last night and that you both got some rest, Hun xxxxxx

 

[Tin]

Hi Ann,

A lot calmer today, leaning is still with us. we only had a brief anxiety moment when in the car this afternoon, driving friend to station. She just wanted to get out of the car all through the journey.

We have CPN, hard to get hold of though and usually they are completely useless, any queries I give them their stock answer is "I'll get back to you" so I no longer approach them. The social workers, we have had 5 in two years, first one got promotion. second one was only part time and so under a lot of pressure. Third one with own family problems, she looked and acted so stressed out. fourth one diagnosed with severe depression and fifth one, well we have not seen this one yet!

Mum can have anxiety free days and usually on these days she looks happy in her own world. I am not expecting great things from gp visit next week, I really want to try and sort out this restlessness and find out if I can give mum any herbal remedies, but I am still not convinced that the anti depressants are helping her.

 

[Tin]

Anti depressants and other medications are really confusing the hell out of me. On advice of gp and because of insane restlessness, mum is no longer taking Fluoxetine and is back on Mirtazapine. The last 3 nights she has been up at various times, wanting to get dressed, making her bed etc. Not had this behaviour for ages. So today, like the last time she took Mirtazapine, instead of night time, giving it to her in afternoon, it does make her sleepy but would rather deal with this in the afternoons at least I know she is just dozing while tv is on. The restlessness during day is still with us, but honestly not as intense, I suppose this is what tired her out and so made sleeping through the night easier.

Any day now we are due our first delivery of Memantine and I am still not sure about this one, I have heard that side effects can be fairly bad. Also if and when she does stop taking this, deterioration can be quick, but Memory clinic doctor feels that this will help to 'calm' mum a little.

 

[LadyA]

William only started taking memantine when he was in the later mid stage of the illness, in addition to the other meds he was on - trazadone, risperidone, and exelon patches. In all honesty, I can't say I noticed any adverse side affects on William - but he just seems to have been fortunate like that. He never reacted adversely to anything. Of course, the other side of that is, it took a long time and a bit of trial and error to find the combination of meds that had beneficial effects on him, too!

 

[Tin]

William only started taking memantine when he was in the later mid stage of the illness, in addition to the other meds he was on - trazadone, risperidone, and exelon patches. In all honesty, I can't say I noticed any adverse side affects on William - but he just seems to have been fortunate like that. He never reacted adversely to anything. Of course, the other side of that is, it took a long time and a bit of trial and error to find the combination of meds that had beneficial effects on him, too!

My mum has Vascular Dementia, How long did William take the Memantine? The side effects do worry me, as mum does seem susceptible, today she is eating like a horse, we have had tea, Chicken Kiev, new potatoes, mixed veg and for dessert a large piece of ginger cake with cream and she still wants more, keeps going into kitchen to look for things to eat! I just wonder sometimes if it might be easier to deal with the Dementia without any prescribed medication, I don't know what stage she is at, stopped checking these ages ago, but I guess if memory clinic have prescribed it, then she must be later middle stage.

 

[Spamar]

Tin, OH took memantine for about 3 years, with no ill effects. He certainly didn't eat a lot, but this predated memantine. If the presentation demands it, OH was going through delusions, then accept it. Rather a few side effects than dealing with that and associated symptoms!

 

[Marnie63]

I might get shot down for this, but I stopped some of mum's meds and to be honest, I'm dealing with things much better now. Of course, this could be just how mum reacts. Mum was put on Amisulpride and Mirtazapine. Psychiatrist said she was depressed, hence the Mirtazapine. I don't believe she was ever depressed - she has dementia. I was told to keep her on the Mirtazapine indefinitely and the Amisulpride for a year! I gradually weaned her off both, and although she is still very confused, I now have no worries about side effects, and she her behaviour is manageable.

I am not for one minute suggesting anyone does the same as me, but I saw so much overmedication in the time mum was in hospital (God only knows how much the NHS wastes on this, it's mind boggling), and the community mental health team continued in this vein. I think the issue is no one has time to carefully monitor the meds. I took the stance that I know mum better than all of them. I am the one living with her, so am happy to take the consequences. I find it very worrying that antipsychotics are prescribed for such long periods for the elderly. It can't be good. I am no medic, but the mental health team in the last hospital mum was in were very good and could not stop stressing that they would keep mum on anti-psychotics for as short a period as possible as they are "not for long term use with the elderly". I accept that there were times when it was necessary to give my mum antipsychotics, but she definitely does not need them now.

Of course the 'system' does not have time to monitor meds and side effects, and so on goes the medication, rightly or wrongly. I do feel very strongly about all this overmedication hence my actions with my mum. And this is why I am going to try my very hardest to keep her at home for as long as possible, so that I can control her medication.

 

[Tin]

Tin, OH took memantine for about 3 years, with no ill effects. He certainly didn't eat a lot, but this predated memantine. If the presentation demands it, OH was going through delusions, then accept it. Rather a few side effects than dealing with that and associated symptoms!

The appetite increase is due to the Mirtazapine, still asking for food and since my first post she has had 2 bananas, biscuits and a bowl of rice pudding. She now wants bread and dripping! I know it will settle down in time, its just an example of how 'susceptible' she is, been complaining of dizziness as well. I was expecting the first course of Memantine today, but not arrived so probably will not be here till Monday. Maybe its my imagination or genuinely happening, but she has been much calmer the last 2 days, except for the night time and I think giving her the Mirtazapine has been the cause of this night time disruption. Of course you are right, a few side effects will pass.

 

[LadyA]

I might get shot down for this, but I stopped some of mum's meds and to be honest, I'm dealing with things much better now. Of course, this could be just how mum reacts. Mum was put on Amisulpride and Mirtazapine. Psychiatrist said she was depressed, hence the Mirtazapine. I don't believe she was ever depressed - she has dementia. I was told to keep her on the Mirtazapine indefinitely and the Amisulpride for a year! I gradually weaned her off both, and although she is still very confused, I now have no worries about side effects, and she her behaviour is manageable.

I am not for one minute suggesting anyone does the same as me, but I saw so much overmedication in the time mum was in hospital (God only knows how much the NHS wastes on this, it's mind boggling), and the community mental health team continued in this vein. I think the issue is no one has time to carefully monitor the meds. I took the stance that I know mum better than all of them. I am the one living with her, so am happy to take the consequences. I find it very worrying that antipsychotics are prescribed for such long periods for the elderly. It can't be good. I am no medic, but the mental health team in the last hospital mum was in were very good and could not stop stressing that they would keep mum on anti-psychotics for as short a period as possible as they are "not for long term use with the elderly". I accept that there were times when it was necessary to give my mum antipsychotics, but she definitely does not need them now.

Of course the 'system' does not have time to monitor meds and side effects, and so on goes the medication, rightly or wrongly. I do feel very strongly about all this overmedication hence my actions with my mum. And this is why I am going to try my very hardest to keep her at home for as long as possible, so that I can control her medication.

My husband was on anti psychotics and the other meds for persistent, horrifying paranoid psychosis, hallucinations & delusions which kept him in a constant nightmare world. It was part of his illness from quite early on, and remained a prominent feature of his illness - just controlled by medication - until the end of his life. No-one likes to see medication used unnecessarily, but for some, it can be a lifesaver.
William's was at home as long as I could manage too - he spent the last 11 months of his life in a nursing home, after his aggression became too much for me to cope with, and he wouldn't allow personal care, nor eat or drink enough at home. His consultant monitored his meds every six to eight weeks throughout his illness.

 

[Tin]

I might get shot down for this, but I stopped some of mum's meds and to be honest, I'm dealing with things much better now. Of course, this could be just how mum reacts. Mum was put on Amisulpride and Mirtazapine. Psychiatrist said she was depressed, hence the Mirtazapine. I don't believe she was ever depressed - she has dementia. I was told to keep her on the Mirtazapine indefinitely and the Amisulpride for a year! I gradually weaned her off both, and although she is still very confused, I now have no worries about side effects, and she her behaviour is manageable.

I am not for one minute suggesting anyone does the same as me, but I saw so much overmedication in the time mum was in hospital (God only knows how much the NHS wastes on this, it's mind boggling), and the community mental health team continued in this vein. I think the issue is no one has time to carefully monitor the meds. I took the stance that I know mum better than all of them. I am the one living with her, so am happy to take the consequences. I find it very worrying that antipsychotics are prescribed for such long periods for the elderly. It can't be good. I am no medic, but the mental health team in the last hospital mum was in were very good and could not stop stressing that they would keep mum on anti-psychotics for as short a period as possible as they are "not for long term use with the elderly". I accept that there were times when it was necessary to give my mum antipsychotics, but she definitely does not need them now.

Of course the 'system' does not have time to monitor meds and side effects, and so on goes the medication, rightly or wrongly. I do feel very strongly about all this overmedication hence my actions with my mum. And this is why I am going to try my very hardest to keep her at home for as long as possible, so that I can control her medication.

Can totally understand LadyA and Williams situation and needs, but I am questioning all of this and honestly have been tempted to do the same with anti depressants, but won't now not if things are calmer, My problem is introducing further medication when it may not be needed, think I am going to wait 2 weeks to see how things go.

 

[LadyA]

Can totally understand LadyA and Williams situation and needs, but I am questioning all of this and honestly have been tempted to do the same with anti depressants, but won't now not if things are calmer, My problem is introducing further medication when it may not be needed, think I am going to wait 2 weeks to see how things go.

Good plan. If it isn't needed, you're always better without it. Several attempts were made over the years to even reduce William's dose of meds, but as soon as the dose was decreased even a tiny bit, he was back being tormented. So his consultant felt that risk or not, it was a case of needs must.

 

[Tin]

Good plan. If it isn't needed, you're always better without it. Several attempts were made over the years to even reduce William's dose of meds, but as soon as the dose was decreased even a tiny bit, he was back being tormented. So his consultant felt that risk or not, it was a case of needs must.

What set all this off for me was mum's last memory clinic appointment in March, will try and keep it brief, afraid I am one of those that uses many words when one will do! Since December mum's restlessness had been increasing, but she was beginning to sleep better at night, been taking Fluoxetine since January 2015. At appointment I explained how restless she was, giving him some examples and he said that if we stopped Fluoxetine then all her obsessions will return, he was the one that suggested trying Memantine as a possible calming effect. I left that meeting feeling very concerned and wondering why he would not look further at the anti depressant. Since then mum's restlessness just got worse and the ongoing walking to and from garden gate, car and front door were creating other painful problems for her and some of the side effects for Fluoxetine were there including bleeding. Decided to make gp appointment and had to wait a few weeks to get to see preferred gp. Explained all to him on Monday and he immediately agreed with me and so back to Mirtazapine. While some of her previous Dementia behaviour has returned, but she is calmer and not pulling the handles off front door and car!

It has amazed me how quickly the restlessness has disappeared, but annoyed with myself that I let the memory clinic appointment go so badly, if I'd explained myself better, mum could have been off Fluoxetine sooner.

 

[Tin]

So it has finally happened, knew it would, just a question of time. Mum has lost her lower denture, last seen last night in company of top one, Just got her to remove before bed time and there it was, or there it was not. I have no idea what has happened to it, the last few days she has taken to removing them during the day to rinse. My fear is that she has binned it and I have put rubbish out for tomorrows collection!!! Hopefully it will turn up, I have already checked all pockets and bags, hope she can cope with just top denture, but may look into a visit to dentist for new set - Looking forward to that!!!! Not.

 

[Tin]

To give you all an update, I have decided to start mum on Memantine tomorrow morning. In a nutshell the last few days have been a nightmare and of course the night time has been no better so giving up on my original plan of waiting two weeks-don't think I will survive it!!! Her sundowning has been aggressive and gone on and on and I am getting a sore throat answering all the questions. Swopping anti depressants has had some benefits, but not enough so tomorrow is D Day.

I realise now that this was probably the kind of behaviour I was waiting for, while she was calm there seemed no point.

 

[Tin]

Mum took first Memantine this morning, I so hope this works and eases everything, the last few days have been awful and the hardest to deal with is her endless chatter, always asking questions, repeating stuff I say and pestering the dog with insane questions and statements, there is not a quiet moment in this house till about 9pm.

Sound of my mother's voice is really getting me down and yes I have a terrible headache, can't seem to shake it. Got plumber coming soon to sort out toilet problems and it will be a task for me to keep mum away from him while he carries on with his work, as I know he is keen to get job done and leave because he has a bit of a do tonight, think I'll get him to lock himself in bathroom, that way she will not bother him! Mum is in bathroom at the moment, still talking telling me where she is and what she is doing!!!!!!!

Sundowning started at 11am and is just beginning to slow down, but the chatter won't.

 

[Spamar]

When OH first took Memantine, it was on a slowly increasing dose. Took 4 weeks before started on full dose. It did work, he had delusions, but I can't remember a sudden improvement.
Hope things go well for you!

 

[Tin]

When OH first took Memantine, it was on a slowly increasing dose. Took 4 weeks before started on full dose. It did work, he had delusions, but I can't remember a sudden improvement.
Hope things go well for you!

Same for mum Spamar, we will be at full dose in 4th week - I just want this hyper activity/chatter behaviour to slow down, it makes caring for her almost impossible.