The downhill spiral continues

zeeeb

Registered User
We went away with my parents to the country to get away for a long weekend. It was great to get away and go bush, and we really enjoyed the experience, so did the kids. But mum, not so much. It was too cold for her, and after a few really bad weeks, she probably shouldn't have gone away, but what do you do? sit in the comfort of your recliner until alzheimers destroys you? or get out and do something with the time you have left? create some photographic evidence that you actually did do some interesting activities with your grand children?

Last time we went to her geriatric specialist. They told her to stop taking Aricept to see if it was going to affect her tremors, as she has an appointment coming up with a neuro psych who specializes in parkinsons. So she went off the Aricept for 3 weeks, and it was a complete disaster. Apparently the tremors reduced a bit to start with (indicating it may be medically induced rather than parkinsons), but then she had 2 big falls, and started having massive panic attacks when left alone (while dad goes to work).

So she's been back on the Aricept for a few days, and we'll see how that goes, see if she improves again, and see what the neuro psych has to say about all of that. It's hard to know if her issues are alzheimer's based, or depression / anxiety / mental health based. She seems to have truly given up. She can no longer put a jacket on by herself, she needs the same kind of assistance I give to my three year old daughter. And she can no longer put her shoes on by herself. I'm not sure if she can't or won't. I'm not sure if the pain is that bad, or if she's just given up mentally.

I'm not entirely convinced that alot of her dependency issues are much to do with alzheimers. But believe that a large portion of it is based on anxiety and depression and just giving up because the prognosis is bad.

There is this massive battle going on. Mum is in constant pain, enough pain that she won't dress herself, or put her shoes on because the bending and twisting cause too much pain, but she refuses to go to the pain clinic, because she fears becoming addicted and dependant on pain drugs. Same reason she refuses to be hospitalised to sort out her depression medications, because she's worried about being drugged out. But she can't do anything! It's painful for her to stand up at the sink and peel 3 potatoes or do a load of dishes. Mentally, she's is still fully able to do that stuff, i'm pretty sure it's the physical pain that stops her doing anything.

I keep going over and over it, but it's impossible to understand. My dad gets so angry that every time he takes her to the GP or the hospital about bad panic attacks, all they do is give her valium. But she's not seeing a psychologist. There really are no other ways (that I'm aware of) to deal with panic attacks than psychology / counselling or drug threrapy with anti depressants and valium type drugs. Doesn't matter how many time we talk about going to a psychologist, it never happens. She goes to the dentist, the physio, the chiro, the alzheimers specialist, the gp, but the psychologist is never on the list. I know that dad probably gets a bit paranoid that he'll be in the firing line, but hell, she needs to sort out some of her demons, and fast. She needs to be able to open up to someone about her fears and concerns.

He ignores the fact that she has been chronically talking / yelling / screaming / punching / kicking etc. in her sleep for over a decade now. He doesn't even begin to think that could be related to mental issues.

Not to mention the next big issue. She has 2 replaced knees, and needs to get them both re-done. And she doesn't want to go under general anaesthetic. She struggles with generals, so wants to try and get both knees replaced, at once with a spinal block... conscious... I've tried to tell dad that "what about panic attacks?" I mean they have to get saws and hammers out, and he thinks she'll be ok if he sits with her.... as if she's not going to have a panic attack or 20.

And I've tried to broach the subject of the fact that she'll need to recover in respite, as he won't be able to lift and shower her and toilet her without extra special equipment etc.

And I haven't even broached the subject of the fact that a massive operation like that, she'll probably need to be fully taught how to walk again, with the mental issues she has, that will be quite a task, and along with the alzheimers issues will be challenging to say the least, and that she won't recover as easy as the last 2 times she had those surgeries over a decade ago, and that it'll probably send her alzheimers into a massive tailspin....

And there is a possibility that she may not learn to walk properly again if the alzheimers and mental issues cause problems. He seems to think (or say anyway) that it'll be ok. I think, that it'll be far from ok.

Arghhhhh.
 

Karjo

Registered User
Jan 11, 2012
481
0
I need to get up to go back to work after 3 weeks of stress related sickness (but nothing has been resolved.)
Just didnt want to be the first to look at your thread and not reply. Somebody will be along soon with some words of advice. Sounds like you could do with it. Thinking of you.
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Oh boy could you do with some support.

I can't advise. Your problems are not anything that I have encountered. Except that I have a husband who can't think outside any box. IF I were to ever need such surgery as your mum does, I feel pretty sure that he'd make no effort to provide any support for recovery. He'd sit me in a chair and ignore me. I might get a cup of tea every now and again, probably plonked out of my reach. Some people just don't have the capacity to think ahead, so I don't envy you at all, can't offer any advice, but just keep posting on here to give you some companionship at least.

Love

Margaret
 

FifiMo

Registered User
Feb 10, 2010
4,703
0
Wiltshire
Hiya Zeeeb,

Just a couple of thoughts from me...how is your mum's powers of communication? I ask because we had simiilar situations with my mother with regards to having pains etc until we realised that her actions often belied the words. What we found out was that she was saying she was sick and in pain because she couldn't articulate how she was feeling or what might be causing it. So the word "pain" had become a common word to describe something not being right and this even stretched we think, to her not being able to explain what was going on with her memory and her confusion etc.

With regards to pain meds, you could perhaps tell her that you'd met her doctor and he had given you some herbal tablets for pain which were no addictive and that he thought would help her big time. Then give her something like a multi-vitamin tablet to take!!! If, as you suspect, some of her problems might be psychosematic, maybe her pain will improve with her new "medicine"

Fiona
 

zeeeb

Registered User
Fifi, her communication is still fine. I don't live with her, dad has control of everything. He doesn't want her to be "drugged out", he doesn't want her to be taking tonnes of addictive drugs, but I think he's in denial that she may only have a few years left with her mind in tact, he seems to think Aricept is permanent, although i've told him multiple times that it often only delays some symptoms for a few years. So she has been in a sense controlled by him, when she speaks, I hear his words.

He is a massive control freak, and what he says goes. He is looking after her, she feels most comfortable with him doing that rather than anyone else. but this whole "i've seen people who've been made into junkies by their doctors" attitude of dad's is not helping at all. Her mind is still quite fine, but she's lost her will rather than her ability to make her own decisions. My dad is controlling almost to the verge of abusive, but not quite. And she's finally after all these years, given up and is letting him just take over everything.

So, I can't change any of the little things. Dad will control everything, and because of his influence, she just does what he says, even though she is capable of making her own decisions at this stage (she was a nurse, and worked in aged care, and her dad had alzheimers so she still knows alot more than most of us about that side of life, aged care, dementia and death).

I see her Alzheimers / Geriatric specialists with her, but not her GP (she lives 2 hours away). She wanted to leave him years ago, but now she knows there is no where else to turn. He is the person who will keep her out of a nursing home as long as possible. He is the one with the cash, which she certainly has gotten used to. She doesn't feel comfortable with anyone else and panics when he's not around. So she won't fight him on any of the big issues.

I'm just venting really. There is no real solution to the problem, I just have to learn to let go. I can't make decisions. She got her will done again when she was first diagnosed a year or so ago, and gave him full power, financially, medically etc... So I just have to go along with what he says and does, try and gently persuade him to listen to my ideas as well. She doesn't even feel comfortable staying at my house without him, so she's certainly not going to make any big moves to either leave him, or stand up to him after all these years, and with this prognosis. It's like her mindset says that she made her bed, now she has to lie in it, because it's better than the bed in a nursing home.

Frustrating... No silver linings here.
 

FifiMo

Registered User
Feb 10, 2010
4,703
0
Wiltshire
Hiya Zeeeb,

I'm sorry I didn't know more of the background before I posted and thanks for filling in the gaps. I think in the circumstances that you are entitled to vent and no wonder you are frustrated. My sisters and I had similar frustrations about various aspects of my mother's dementia and in particular years ago when she'd been in hospital and they recommended residential care when she got out. That was the problem though - they let her go home and she was not going anywhere. We got her on the list for assisted living instead and we didn't learn until much later that she had been offered a place on 3 separate occasions and had turned them down. We offered to buy her an apartment as her house was high risk to her. On and on it went. She eventually was put into a home (she'd lost capacity by then) and you absolutely loved it. She blossomed when she was in there and it took years off her. This brought our frustrations back again because she could have had all that for years but wouldn't listen. Like you are feeling now, it can consume you because you have the ability to observe what is happening and know that things could be different/better. In the end up we reconciled it in our own minds by reminding ourselves that we are all the product of the choices that we make in life. My mother was the product of the choices that she made. Were they the right choices - absolutely not. However, in the world of dementia where you lose, eventually, the ability to make these choices for yourself the very fact that she was making them was what was important I guess.

It really does sound like you are doing the utmost that you can in the circumstances and maybe that is all that you continue to do. What we do know is that as your mum deteriorates then your dad won't be able to continue to take control and there will be a crisis that will arise at some point. At least you are there to step in when something like that happens and continue as you are doing at present until that time arrives. This might not feel satisfactory to you, but your mum is as much a product of her choices as mine was. Maybe we just have to learn from all this and make sure we don't let history repeat iitself, which for me I am sure it won't....but I am not moving from my home and I've already decided that! LOL

Take Care

Fiona
 

zeeeb

Registered User
Yes, that is one of the plethora of difficult things to do with alzheimers, back off and let go. I'm the daughter of a control freak, but at least I'm aware and realise that I need to work on this aspect of myself...

And very true, we are a product of our choices. I'll write down that and stick it on my fridge. We all make poor choices, and it's what shapes us, hopefully the good choices, weigh out the poor
 

Big Effort

Account Closed
Jul 8, 2012
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Hi Zeeeb,

I am not surprised that you are venting........ depression, anxiety attacks, dementia, a controlling husband, his aversion to drugs that could help her........

Regarding the Alzheimers, and the passiveness, refusal to try, inability to do things. Mum has Alzheimers, and there is no 'controlling influence' around here. She displays many of the 'giving up' behaviours you mention.

Her neurologist pointed out to me that the worst affected part of her brain is the procedural part. She doesn't know 'how to...'. Socially she can be astonishingly competent, but now she can't actually do anything, using the phone is beyond her, feeding the wild birds, putting clean clothes away. At times I have been frustrated/irritated because who doesn't know how to open a carton of milk? Mum doesn't, that's who. Another doctor said I should imagine that Mum has lost the use of her 'starter button', it has vanished, and with it she cannot initiate activities as she doesn't have the first step, or the second, and not the third either.

Medications. When the parts of the brain that control mood get attacked by Alz plaques, then all sorts of behavioural issues emerge. Perhaps the panic attacks can really be treated by drugs. I have just gone through this 'painful transition', painful in that it was painful for me, not her. I too felt drugs to control anxiety were addicitive. The gerontologist and others on the forum encouraged me to aim for Mum's comfort and not worry about addiction issues. Better a tiny bit addicted, than in cold fear and full of worry. They are right. So Mum started on one anti-anxiety pill a day. Now the gerontologist says that two may be the perfect dose - and this time I am listening and not flinching, because feeling calm, feeling one can cope, and free of panic is quality of life. The difference (for all of us, especially Mum) is having a day where she can read, garden, potter about and just enjoy the sunshine, or having a day where she obsesses, asks and asks and asks with no answer putting her at ease, too upset to read or relax. Now I look at her read-snoozing in the garden, and I know anti-anxiety pills are right for Mum. This is quality of life in as far as I can provide it.

Regarding your Dad, his views on medication, and doctors drugging your Mum out of it are plain mis-informed. He doesn't have dementia. So I would expend my energy on him. Get data to show him she needs meds for her comfort and well-being, not ours.

Letting go. You are so right in this. And with letting go comes a fresh round of grieving, at least for me. It is acknowledging that despite our best efforts, including lots of love and care, that we are not in control of the situation. Fighting it is useless. So we let go. I'm a dynamic person who never gives up...... and I am now learning to let go. What is in Mum's short term interests is best for her.

I do really, really feel for you though, as you certainly have a tough parental dynamic there. I wish you a gentle, pleasant day - you are doing your best! BE
 

nicoise

Registered User
Jun 29, 2010
1,806
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Dear BE (and Zeeb)

I have said to Zeeb that much she had written were my experiences with my mum.

What you have just posted is a brilliant summation of many of her problems, and for me you have clarified a few of my thoughts. I like your analogy of the starter button etc missing, so that actions/procedures can't be initiated. In many ways my mum could cope, was articulate, interested, informed, had good memory etc etc - but couldn't "do" things.

I also agree with your views on medication - it certainly is worth a try to see if there are benefits, but I guess for Zeeb it is somewhat out of her control. And thus the letting go - another thing I had to learn to do, and still struggle with at times until I've worked my way fully through a problem in my head. Still learning!

Thanks! It helped me, I hope it helps Zeeb find some peace too.
 

Big Effort

Account Closed
Jul 8, 2012
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Dear Nicoise,
Thank you for that! I spend a lot of time on the forum? It irritates my husband as he says I am wasting time. So often I put a lot of time/thought into my posts.... who knows if it benefits anyone. Am I a time-waster? An attention-seeker? Addicted to the forum?
Who knows. I think it is my current way of working through grief, and trying to help others as I cannot really help Mum (in the sense of solving Alz issues).
Your post did me good. Thanks. Hugs, BE
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Dear BE

I don't think anyone spends too much time on this forum - they spend what they need. And most of it is not a waste of time, otherwise none of us would be here. Some people (like your husband maybe) don't see the value of forums, but the plethora of such things belies that, lots of people get benefit from them. It's a new way of getting advice, compared to running next door to your sister or cousin. They ain't next door any more.

This forum has imparted more support and common sense over the 5 years that I've been on here than I could have imagined.

Keep posting, love, as long as you feel it is of benefit.

Margaret
 

nicoise

Registered User
Jun 29, 2010
1,806
0
Dear BE

I echo Margaret W's post - for me, my method of coping with what's going on in my head is reading and information; I have a couple of people I might be able to talk with occasionally about the world of dementia, but otherwise without TP I would be very isolated and struggling to stay on top of it all.

It is my online self-help book and counsellor ;)
 

zeeeb

Registered User
If i had a dollar for every minute i spent reading about alzheimers, and on this forum etc. i'd be a millionaire. But it does help me cope, and help me realise that I have to try and maintain patience and tolerance when dealing with my mum. Reading what everyone else is going through and how they deal with it helps. And I'm sure knowing what may be coming my way will prepare me better for the future.

And, still, there are people worse off than me and my family.

I guess we all take for granted the good life, and when it's snatched away from us, we feel like it's unfair. But perhaps we should have enjoyed the good life while we are in it, and when it's over, well, that's it. We need to learn to appreciate our bodies and our health and enjoy it while it's able to do everything. It (the body) won't last forever, that's the only sure thing.
 

Big Effort

Account Closed
Jul 8, 2012
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Good morning Margaret, Nicoise and Zeeeb,
Thank you for allowing me to use the forum to 'self-medicate' through the grief of dementia. Yes it does help. And I wish I had joined 3 years ago, instead of waiting until the pain became so great I had to vent, cry. The dam has burst, all I did when I joined was cry. Post after post with tears running down my face. And, I agree, Zeeeb, no matter how low/upset/frustrated/angry I am, when I read through a few posts, there are many, many far worse off, and this also helps me get my situation back into a healthy perspective. Healthy medicine, this forum is. No booze, no drugs, just plain, honest sharing. And it is free of charge!

I want to thank you though. Actually I was thinking of stopping. I had started to feel that my long-winded responses were useless to all, self-centred, and worthless. Strange that. Your giving me permission to let hang out what is on my mind was a shove in the right direction. So I won't quit replying. It is a kind of therapy and obviously I need that therapy right now.

Thank you all so much - apologies for sabotaging your thread, Zeeeb! Now.... my day beckons. Love BE
 

zeeeb

Registered User
Feel free to reply as much as you like. Everyone wants to vent, and its nice to think someones listening, and that others understand some of what I'm going through. Just to know someone reads my long winded ramblings is comfort.
 

2jays

Registered User
Jun 4, 2010
11,598
0
West Midlands
Dear Nicoise,
Thank you for that! I spend a lot of time on the forum? It irritates my husband as he says I am wasting time. So often I put a lot of time/thought into my posts.... who knows if it benefits anyone. Am I a time-waster? An attention-seeker? Addicted to the forum?
Who knows. I think it is my current way of working through grief, and trying to help others as I cannot really help Mum (in the sense of solving Alz issues).
Your post did me good. Thanks. Hugs, BE

Irritated husband..... Yes I had one of those.... I think he saw it as me wallowing in mums condition and not trying to think of anything else but mum. Got told I was too absorbed and that TP wasn't good for me.

He now accepts that it is my group of friends - We just meet on the Internet, rather that meet up for coffee in town.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,806
0
Kent
I have been told I was friends with a computer. There`s no answer to that.

It is only friends on the computer, give or take the odd special friend or two , who can really understand.

When one thing occupies your mind for the majority of our waking and sometimes even sleeping hours, where else to come.
 

Chemmy

Registered User
Nov 7, 2011
7,589
0
Yorkshire
Irritated husband..... Yes I had one of those.... .

They'd be a lot more irritated if we continually off-loaded on them.

Don't know about your house, but the males in mine don't seem to regard the X-box or games on the PC as a waste of anybody's time.....:rolleyes:

Or hours spent on the golf course...

Or watching sport on TV....

I'll stop there. :D
 

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