Where to from here ....

[Linbrusco]

After being in care for a year, with a huge improvement in Mums quality of life for first 7 mnths, improved mood, gaining weight etc, since Feb/March its been an off & on battle with UTI's, agitation, anxiety, and steadily losing weight.
Bad days outnumbering good.

She swings from being cooperative, eating, and joining in activities, to refusing care, refusing food or drink, refusing to join in.

After about 3 mnths of this, and trying every trick in the book, Nursing staff, after consulting with me tried her on 0.5mg of Lorazepam in the morning , when she could be at her worst.
For first 2 weeks it was great. We thought we had our Mum back before all the agitation set in. Seemed a bit sleepy but that was OK.
Then her speech started to get garbled. It was hard to understand her at times.
Nursing staff said it could be Alzheimers progression. We werent convinced.
The then upped her Lorazepam to 1mg as she was getting agitated again.
This just made her like a zombie, and couldnt string two words together, plus wobbly on her feet.
So after 2 weeks of this they removed the Lorazepam to give on as needed basis and upped her anti depressant at night.
Once again, after a few days Mum seemed alot better.

Now another 3 weeks later, shes back to the agitation, delusions, and hallucinations & hardly eating, so referred to a Dietician, who is going to start her on Fortasip.
Mum is stil at 72 kgs, so a good weight for. her height, but has lost 9kgs since February.
3kgs just in the last 2 months.
They have tested her for UTI's. All negative.
Shes even previously had complete screening & blood tests for Delirium.

I have another consult tomorrow with nursing staff, GP and mental health team.
Now they are possibly looking at an anti Pyschotic medication.

Researching here in New Zealand it seems to be Resperidone is often subscribed, but will know more tomorrow.

Any comments/suggestions appreciated

 

[Risa]

My Mum was on resperidone but it made her so ill, she was virtually in a waking coma She came off of that and is now on 2 different anti-depressant meds (memantine and trazadone) and this drug combo is much better for her. She still gets a bit aggressive/agitated but we do have the option of increasing the doses/juggling the timing of the doses to see what is more effective. The side effect of the meds is that she can get a bit sleepy during the day but that is no bad thing as otherwise she would wear herself out pacing up and down.

Hopefully your Mum won't have such a drastic reaction if she is prescribed resperidone but thankfully there do seem to be more drug options available now if people don't get on with a particular med. Just have to keep trying to find the right one.

 

[Linbrusco]

My Mum was on resperidone but it made her so ill, she was virtually in a waking coma She came off of that and is now on 2 different anti-depressant meds (memantine and trazadone) and this drug combo is much better for her. She still gets a bit aggressive/agitated but we do have the option of increasing the doses/juggling the timing of the doses to see what is more effective. The side effect of the meds is that she can get a bit sleepy during the day but that is no bad thing as otherwise she would wear herself out pacing up and down.

Hopefully your Mum won't have such a drastic reaction if she is prescribed resperidone but thankfully there do seem to be more drug options available now if people don't get on with a particular med. Just have to keep trying to find the right one.

Thanks Risa.

They are trialling Mum on min dose in the morning of Quetiapine. Hope something works soon. I think Mum is in pretty much a permanent state of agitation and exhaustion.

 

[canary]

(((((((((hugs)))))))))))))))))) Lin
I hope it does the trick.

 

[jugglingmum]

You might want to have a look at LynneMcV's thread, her husband has just been started on this medication, not been on it long, but things seem to have picked up well since it was started.

 

[Spamar]

It worked for OH, though he had to go to a fairly high level. When he was stable, the level was gradually reduced and memantine substituted. He had hallucinations and delusions and was getting very angry either me, btw.

 

[Linbrusco]

After a week of Mum being on Quetipine, and not seeing her since, I am about to see her this morning and have a review with the mental health team.
I did call the CH Manager and they did say although early days Mum had been better, more cooperative with personal cares and eating ... but I have seen this before, so will see what eventuates over next month

 

[Tin]

Fingers crossed for good results.

 

[Linbrusco]

Thanks Tin.

 

[Linbrusco]

Just an update.
After Mum being on 12.5mg of Quetiapine (Seroquel) for 2 weeks and seeing some improvement, she was still agitated by evening and refusing to change into night clothes or shower/dress first thing in the morning. After 4 days of not showering anx sleeping in her clothes, Mental Health Team contacted me to try her on 12.5mg in the evening.
Its now been 5 days, and yesterday I went to see Mum with my husband & teenagers. Mum was so good and so happy to see my husband She has also been cooperative again with showering & dressing.
For the first time in 3 mnths I felt comfortable enough to take her out for a short drive and took her to McDonalds drive through for an icecream.. her favourite
A bit anxious leaving the CH, more the open space & people, I feel.

Still fingers crossed though.

 

[LadyA]

When anti psychotics are needed, they can be a god-send! Yes, they need careful monitoring for side effects, and reviewing regularly. But they can, when they work well, restore some quality of life to a tormented person. My husband was on risperidone for over four years. We could never have coped without it!

 

[Linbrusco]

Just over a month and they have Mum on 25mg Quetiapine in the morning & 12.5mg at night.
The change in Mum so far is definitely for the better. Tired but not drowsy. In fact her general conversation & attention span is better too.
Last Saturday Mum had 10 family members visit. A bit much and I was worried how she would go, but she did really well.
Nursing staff say shes put on 0.7kgs in that month.
Just a little bit resistant still to cares in the morning but enough for Carers to manage.

 

[Amy in the US]

Lin, that's good news about your mum! I can well understand being nervous about the medication change, but it seems to have produced good results for your mother.

 

[canary]

Oh, thats a good outcome. Sometimes its a balancing act between medication and side effects, but it sounds like they have got the balance right.

 

[Shedrech]

what a relief for you Linbrusco
and, of course, so much better for your mum
long may it last

 

[Linbrusco]

Just keeping this post going as a means for me to reflect.

Now 6 weeks on Quetiapine and we’ve hit another speed bump. Last week wouldnt shower for 3 days or even cooperate enough to give her a wash. Then back to being coperative.
Staff report the odd good day, eating, laughing, joining in more, then the next day in a foul mood the minute she wakes.
Today she refused breakfast, morning tea, and was still jn her nightie at lunchtime when my sister & Dad visited.
Dad who doesnt understand was not best pleased to see her like this telling my sister to get her shower & dressed. Mum gave him a mouthful and told him to never come back again.
Really quite worried if this pattern despite meds continues she could be moved to physcho geriatric care?
She sees mental health team and I imagine they will increase her Quetiapine again?

 

[canary]

Oh @Linbrusco , I have no suggestions, but wanted to say that I am listening
(((hugs))))

 

[Linbrusco]

Feels like I'm in a never ending nightmare
Over the past week Mums agitation, and anger was replaced with agitation and crying.
My Mum never cries.... never even cried at her own parents funerals.
Visited last Saturday and she would hardly look at me, just snapped my head off.
She had a tear rollng down her cheek, and I went to wipe it, and she told me off. I only stayed 30 mns.

Sister visited Monday, she was a bit better mood wise, but carers said she had started hitting them when they were trying to do personal cares. They know now to try her several times. On the 4th attempt later in the morning she is often a bit more cooperative.
Tuesday I get a call from the nurse to say Mum is very agitated about her wedding ring and wanting it off.
Mum has not been able to remove it for past 4 yrs since gaining weight with her Alz.
Now with losing weight again, they got some vaseline and managed to get it off.
Carers reported Mum now sleeping at night naked
Now my Mum is as prim and proper as you would ever get, nighties to her ankles and neck!!

Today my sister and I both went to visit as we had a meeting with Mental Health Nurse, Manager, and Mums main Carer and Dietician.
My sister saw Mum in her room first, and Mum wouldnt speak to her and told her to leave
I felt it best just to leave Mum.

Upshot is that they will increase her Quetiapine in the evening, so that by morning, she is not quite so agitated for personal cares. We were reassured that at this stage they can still manage.
They generally find if the morning starts OK and she showers/washes/dresses and comes through for breakfast, then her day is somewhat better.

Its like a continual 1 step forward 5 steps back.

 

[Cat27]

I hope the medication increase helps.

 

[Linbrusco]

Mums Quetiapine is now 25mg am, 12.5mg afternoon, and 12.5mg pm.

Once again doing a lot better. Since my sisters last visit, and Mum telling her to go away and leave her alone, my sisters MIL passed away, so up until yesterday had not seen her for almost 2 weeks.
Sister said Mum gave her a hug and told her that she had missed her.

Now if I dont get equal response today I will be put out

I just wish the level of meds they have Mum on now could remain, and Mum would just stablise for a while.