Having a better day

[Big Effort]

Hi guys,
This forum has helped me already. I must accept that I have been in denial about my mother's Alzheimers. Part of it is she really wants to spend the rest of her life at home (she lives next door so we can care for her). I have bought into this. Yet quality of life is low for both she and I.

So while I take in the magnitude of accepting that Mum must go into a home - I need to work as finances are crushing us - this too is absolutely terrifying.

And yet, today is a better day. She started out badly, I now look at the emotions written on her face - nothing positive to report I am afraid. As my husband will be away all day on 800 km round trip, I am alone to deal with her dissatisfaction, obsessing, zero memory, and the constant, constant reminders that this lovely woman has very little IQ left.... So, I did it. I slipped her one benzodiasepine with her morning meds and watched. She sat in the sunshine reading a book, engaged and peaceful. We had a pleasant lunch. And then she sat and read in the garden.

I know these are addictive, but one every now and again when I know I cannot make her happy or well.......

She had a better day and so did I.
Greetings from France, Big Effort

P.S. The real reason I am writing this is because it feels so good not to be totally alone with this dreadful mind-dissolving disease. I know someone out there will know, understand and reply. Therefore I exist - at least on a forum.

 

[Grannie G]

Hello Big Effort

I think medication is justified if it helps the sufferer more than the carer. I don`t care how addictive, it is quality of life which is important.
Your description of your mother reading peacefully, sitting in the garden is far better than previous descriptions of agitation, confusion and aggression.

 

[chucky]

Hi Big Effort, i dont see a problem with taking something that is highly addictive if it has been prescribed by a doctor who knows her medical history and its being administered as the doc has stipulated. Problems would arise if someone WAS addicted to it and WANTS to come off it, but nowadays most doctors dont precribe huge amounts anyway. In my own experience my doc wont give me anymore than 6 at a time, and only periodically. If it helps keep her calm then all well and good.

 

[Big Effort]

Oops, left some vital details out. Yes, Granny G, my aim is to help the sufferer - feeling low and confused and out of sorts is no fun for her. The real danger is she can then get at me or worse, feel I am getting at her, and then the drama balloons..... This is the scenario I must find ways of avoiding.

And yes, Chucky, the prescription came from her neurologist. Last visit in February he congratulated me for providing her with the perfect setting and home care..... first I felt pleased, an inner glow of accomplishment, which was soon replaced by feeling he really didn't understand at all. She is so much deteriorated and yet managed to hide it. I visited him again and he soon cleared up that misconception, saying she has advanced Alzheimers - delivering yet another shock to my state of denial. I am supposed to use these pills only "as needed". Max 3 per day.

Thanks to both of you.

 

[rajahh]

I too think you are doing the right thing. Trying to help someone who is agitated, and confused is a total nightmare.

I had this for about 2 months with my husband when he went onto Zoladex for prostate cancer. I decided to stop the injections, and he has calmed down, and is generally a contented person now.

I know to some this may sound dreadful but the consultant agreed with me that quantity of life is not the aim but quality.

Jeannette

 

[Butter]

Bravo for the French neurologist. I am sure medication - addictive or not - can improve the quality of life. I too believe the quantity of life can be irrelevant.

 

[Big Effort]

Quantity vs quality of life

My mother, who trained as a nurse before the war, believes/believed strongly in the blessing of death, given the right circumstances. She has had a 'do not resusitate' clause in her will for the past 25 years. She, certainly, believes in quality of life but not prolonging discomfort. She does not wish to live to a ripe old age.

So, yes, I think I would have her blessing in administering any medication that made suffering less. However she is sprightly and fit, no where near death, nor do these medications have any impact on the quantity (duration) of life.

She really enjoyed her supper tonight which is wonderful. But when I look at the expression on her face, those unguarded moments when angst, unhappiness, strong negative emotion is written all over it........ where is the Quality? She knows she is a burden.

Thank you for your views, they help me find some clarity.

 

[Pheath]

It’s so hard and am glad TP is providing you some much needed support, nothing is more heart-wrenching or distressing to witness than those you love being robbed of everything. You write very eloquently about your situation and really empathise with the terrifying feelings that come with the realisation you can no longer go on caring. It took us over a year of agonizing until we reached that point and all I can say by way of comfort is the build up to placing someone in care is often worse than the actual reality. I’m glad at least you both had a more peaceful day today, a small oasis of calm in the maelstrom that is dementia, is something we could all do with more of...

 

[Izzy]

Hi B.E. I think it helps to write about how you feel on this forum. You know there will always be someone to listen and more than likely someone who has a similar experience to your own.

I too thought your description of your mother in the garden was lovely. If the medication helps to achieve this then why not? In the last months of my mum's life she was often agitated and we never managed to find something to calm her. It's so sad to watch.

Take care. x

 

[zeeeb]

I feel exactly the same about addictive drugs. Once you get to a certain point where there's not that much positive going on in your life, anything it takes if it makes you feel better, even for a moment, an hour or a day.

 

[Big Effort]

Your words comfort, they really do

Oh my - you have me crying with all your kind words, you really do. It is the grief I feel at living this death of the brain before death of the body, on and on it goes, stripping common sense, the ability to tell the time, to glance at the sky and foretell what the weather is like, almost everything I say to her is misunderstood (for the worst possible interpretation), and where, oh where, in all of this is my mother?

Back to reality now. The day after her anti-anxiety pill, and she seems in good form. Long may this last. And yet, even as I wonder where my mother is, she is right there, often very much herself but in diluted form. A mere shadow as this disease strangles the life out of more and more of her mental faculties.

What I really should be doing is filling in forms for the Alzheimer specialist centre to condemn her to permanent residency.

...really empathise with the terrifying feelings that come with the realisation you can no longer go on caring. It took us over a year of agonizing until we reached that point and all I can say by way of comfort is the build up to placing someone in care is often worse than the actual reality.

Thank you, Pheath.

I, too, comfort myself with the idea she will be happier there. She is so sociable and it will be lovely for her to have others around all the time, and cheerful staff who care and understand, I feel she will have more dignity there. But I also know the mind (my mind) believes what it wants to. Is this more mind-games I am playing? Self justification because I cannot stand witness to this shambles and meltdown?

Izzy, my dear, yes I am writing so profusely because it helps me locate myself in all this unknown territory. I can track my changing feelings, and seeing others in the same situation (or worse) brings an element of reality into what is so unthinkable, surreal, and so easy for me (the practical one) to escape into denial.

Thank you all. I'm crying now because this is hard to face. Onwards and upwards!

 

[chris53]

Good Morning B.E. thank you so much for sharing this lovely moment with us, can let my imagination take over and see your mum surrounded by beautiful flowers and smiling

I too felt rather overwhelmed when my mum was put on medication to help, she was put on antidepressants at the age of 78, but they did not turn her into a zombie, although big reluctance from her to take them in the first place! she was put on Aricept last year and they have made a massive difference to her quality of life, my mum was very anti pills but I would give her anything, or indeed do anything to have my "old" mum back. The gift my dad left mum (he passed away 2 years ago just as mum was going into the Alzheimer's world)was the roses he planted in her garden, she takes delight in cutting some and putting them by his photo, saying to me how lovely dads roses are whilst smiling, wish they grew all year so take care and sending you a big hug x

 

[Pheath]

I know, this illness is like no other to witness, so protracted and silently working its invisible forces to
strip our loved ones of everything that made them the person they once were. 10yrs down the line and I still have very wobbly days coming to terms with all that it has taken from my lovely dad. So little of the man who loved, provided for and protected us all his life now remains and yet there’s still something of his ‘essential self’, that emerges on a rare moment and dearly hope that’s something that will always be.

I don’t know if it will help you but when I was going through the torment of deciding whether to move dad someone on the site suggested I see a move as just sharing the care with someone else, and that I could still take as active a part in his life as I wished. Somehow it greatly helped me make the mental shift from seeing it as a final ‘sending him away’ to just enlisting much needed extra support.

You sound as though you’ve great emotional insight and am sure in time will work through your feelings to reconcile yourself to what will be ultimately be the best decision for your mum and yourself.