Guilt and confusion

[lregan]

Dear all,

Feels strange doing this but I'm starting to feel a little desperate now and need some other thoughts.

My husband is a 40 year old only child with a father of 86 and a mother of 72. His father has been in a home for a year or so now after his mental health deteriorated. We have a 7 month old baby son and a 5 year old daughter.

over the past couple of years, my mother in law was diagnosed with a neurological desease which has left her in a wheelchair. she has to be hoisted on and off the comode, in and out of bed, and cannot take her weight at all. Since this time, she has become increasingly depressed, what with her husband going into a home also.

now it seems she's getting dementia. What i don't understand is where does it stop being dementia, paranoia etc. and start becoming alzheimers? Looking back, it's easy to see that the innocent forgetfulness when she deleted things on her computer or ordered 10 chickens instead of 1 on her online shopping list, were in fact early stages. now, and this is why i now feel in despair, she is accusing us of stealing savings amounting to literally thousands of pounds (which she didn't have), or conspiring to prevent things from happening in her life. My husband and i have worked tirelessly to get her things like a proper care package, a hoist, a hospital bed, more benefits etc. but yet she still accuses us of doing nothing to help her. We are currently trying to get a new bathroom put in (as she desperately wanted to stay in her home, albeit she is living solely on the ground floor) - a wet room so she can be hoisted into a special seat, wheeled into a wet room and have a shower. This is costing £6k which she is paying for herself with her savings as the council don't have the funds, but the organisation of it all, with a family of our own and builders that don't get back to you, is a long and frustrating process. she thinks we're not doing it and that's it's all a lie to keep her quiet.

She has become totally obsessed with money, and people stealing from her or putting things in her house. She sees no reason. Unfortunately yesterday when we took the children to visit, she started gonig on again about how she didn't have any money and we'd stolen it all, and i just flipped. i started shouting at her and crying and trying to explain until in the end i told her she was a stupid old woman and i wouldn't be helping her with her accounts or anything any more. i took the children to the park and left my husband there.

I am now worried that after 17 years of a good relationship with her, i've let her and myself down. My husband and i just don't know how we handle her constant accusations and questions about where her money is etc. We've tried explaining it all to her but it just seems to confuse her more, wears us out and the next day she's forgotten it all anyway.

The doctor hasn't officially diagnosed her which is also a problem because if we get the doctor to visit, she'll assume we're conspiring against her.

any thoughts or advice?

Lindseyx

 

[Nebiroth]

A few things. First, "dementia" is a generalised term that really describe a group of symptoms that characterise different diseases which affect the brain. The most common of these is Alzheimer's Disease. The next most common is Vascular Dementia (confusingly, some diseases have "Dementia" as part of their name). There are others.

The symptoms usually comprise of problems with memory, increasing confusion, loss of time sense, etc. The progression will depend on the underlying disease - for example, Alzheimer's is usually a long, gradual progession, vascular with long stable periods and sudden declines. The overall result is the same though.

Diagnosis is usually based around the symptoms; there is no real definitive and conclusive physical test you can do. But it is important that tests are conducted to eliminate other possible causes of dementia symptoms (for example, a thyroid condition).

The things you describe are very common. People with dementia accuse others of "stealing" or "moving things" because it's the only way they can explain things happening which they don't understand. You mother is convinced she had the money (this is called "confabulation" - recalling or believing things to be true which aren't), she does not have the money now, so the only rational explanation is that someone is stealing from her. As she knows you, then it must be you who is the thief. It does not matter that her rationalisation is false, that is what she believes, and you are very unlikely to be able to convince her otherwise. She will reject any evidence that does not fit her beliefs.

There's little point in trying - it won't work, and will only provoke her and stress you.

There's no need to feel guilty. The accusations and hostility would try the patience of a saint - I know, as I've been on the receiving end. It is very difficult to receive hurtful and ridiculous accusations which anyone in their right mind would not think. And that is the nub "in their right mind". I remember that my dad was convinced that the neighbours were conducting a hate campaign, damaging the house, drilling holes in the wall to steal our heat, things you wouldn;t believe. Like you I lost it one day and just screamed that he was round the bend and taking me with him. It's very cathartic, although you feel awful afterwards!

The upside is that your mum is liable to forget the incident. If only the obsessions would be forgotten.

It sounds horrible, but at least you are able to walk out of the situation - I can't as I live there.

Really this is the only thing you can do; say to mum that if she starts with her accusations again, that you will leave. And be prepared to do it.


It sounds horrible and cold-hearted I know. We have even said things like "If what we do is not good enough perhaps you would be happier in a home".

It really sounds as though the point has been reach where residential care might need to be considered.

As you have no diagnosis, that is the first thing. As next of kin, why not go and ask to speak to her GP? They will not discuss a patient with you, but should be prepared to listen to your concerns. It might be possible for the GP to "ask mum to visit for a healthcheck" or somesuch pretense. This is what we did.

Do you have any sort of Power of Attorney arranged?

 

[jenniferpa]

Dear Lindsey, welcome to Talking Point

Nebiroth has given you a truly comprehensive primer on dementia and its effects, and all I can do is echo what she says.

I very much doubt there is anyone on this board who hasn't lost it at one time or the other - the constant repetion and accusations are enough to try the patience of a saint, which leads to the other biggie: guilt. Guilt and dementia are inextricably linked and you simply have to try to forgive yourself for this time, and the next and the next. Because there will be a next, I'm afraid to say, unless you take a vow of silence. If this outburst is going to damage your relationship with your MIL it will be, sadly, because you let it - she will almost certainly forget about it. You have to get her to the doctor (or the doctor to her) somehow in order to get anymore help. I would think that with her other health issues she would be having regular medical attention? However, I would try to put out of your mind potential accusations: you might has well be accused for something you have done as for something you haven't.

Best wishes

 

[Petrus]

Whatever You Do Seems Wrong

Iregan,
In my view, Nebiroth has given you an excellent snap-shot of dementia and its horrors. You can find additional info in the Society's info. sheets on the web site. There are other places where you can get info. - e.g. the US Mayo Clinic site, the BBC site and the US PBS site. (Let me know if you have any difficulties and need URLs). A brilliant book which helps me enormously is "The Simplicity of Dementia" by Huub Buijssen, a Dutch psychologist and psychiatrist whose father had dementia (you can get it from Amazon). It is very down to earth, based on real incidents, succinct and wide-ranging. Importantly for me it provides a simple model of what is going wrong with the brain's functioning. This allows me to interpret.

The specifics of how a family deals with the sufferer and the effects of the disease on other family members and friends is, I believe, a family-specific decision. When my wife (J.) was diagnosed with early and rapid on-set Alzheimer's just over a year ago, she knew what the disease entails and, in broad terms, how she would deteriorate. We chose to be very up-front and open with our (small) family and
our friends around the world. This has worked for us. We all know that when J. does or says unexpected things (and some is down-right nasty) it is not J. it is the disease. Sometimes I actually say to J. "You don't think that; it is that nasty Dr. Alzheimer making you say that". More often than not she "understands" the message.

The challenge of "doing what is needed" without triggering out-of-control reactions is huge. (I am going through one at the moment as I prepare J. to go into respite care). I take the view that we, the family, have to take the decisions - especially where there is a need to balance interests. We can only do our loving best. By working through it openly together we can help each other to cope.

Best wishes and courage to you all.

 

[paris07]

Hi Lindsay,
I would also like to welcome you to T P.
I have been looking after my mum for 2years 24/7 and she is constantly questioning me about her money(even though she does not understand amounts)I have EPA.
I have blown up and fought back many a time, but then I feel guilty, and on it goes..
The demands and accusations and hurtful remarks make us angry and frustrated.

My only advise to you is to try and forget the bad days, and remember the good ones. I have found getting my feelings out on T P. has helped me , as I feel I am not alone in this journey.

Best wishes to you and your Family,
Paris07.

 

[fearful fiona]

Dear Lindsey,

A welcome from me too. Everybody else has pretty much said it all, and we are all in the same position. I don't believe there is anyone out there who can say they have never "lost it". I know I have and of course felt dreadful about it. Only good thing is that with short term memory problems it is all forgotten by the sufferer - but sadly not by the carer!

It is such a one sided business, isn't it? Having to listen to constant repetition, putting up with accusations of theft, etc.

I don't know how I managed before I discovered TP, it is always there at any hour of the day and night so you don't have to suffer alone.

Good luck!

 

[Grannie G]

Dear Lindsey,

I`ve nothing to add to all the excellent comments that have already been made. I have to admit I have lost my temper many times and however much we know it`s the illness, we cannot be expected to be saints.

Forgive yourself.

Love xx

 

[Cate]

Dear Lindsey

I have nothing to add to what has already been said, except to say, you really are not on your own. We have most of us walked a mile in your shoes, and its not a nice road either, you do what you can, and cope as best you can.

I would agree that getting the medics on board does seem sensible, which with luck will then get you and your husband some support in looking after your MIL. Sadly there is only one way for this to go, and thats downwards, the speed of which nobody can tell, but the sooner you get MIL in the system, when crisis hits, and no doubt eventually it will, support and help should be readily available to you.

One other bit of advice I would give you, although MIL may not be ready for a NH right now, I would certainly at your leisure start looking around. I wish I had way before we hit crisis with mum and had to do it all in a rush, but as they say, hindsight is a wonderful thing.

Dont beat yourself up about getting cross, we are all only human, but the more you visit TP, the easier it will become to understand AD, and there are some very wise folk around here who will be able to give you some really good advice.

 

[Mameeskye]

Hi Lindsay

My Mum was like this too. She accused me of taking money that she had loaned me (needless to say I went out when the boys were small and found a job to pay it back as fast as I could eventhough that had not been our original agreement but I hated how she was talking to me and about me to others).

She accused "dead" relatives of coming into the house and stealing her bag/cash etc.

She would argue over anything.

At times you would have had to have had the patience of a Saint not to lose your temper. She grumped at me and could not understand why I could not drop everything and race to her (I had two babies and lived 225 miles away) When I did go she was grumpy.

Like many others I do not have the patience of a Saint, however with the diagnosis it became easier. The best thing was the relief as the dementia worsened she started to trust me again where she had been suspicious and doubting for no reason. Now she is like a child again with me (though can be feisty on occasion).

You have had some good suggestions. I would suggest that you get a doctor to visit, possibly having first outlined instances of confusion etc. in a letter. The GP will no doubt be able to explain the visit away as a standard happening to x,y or Z these days or fit it in to a normal appointment. They will manage so that you are not implicated in anyway (if they are any good!)

((((((hugs))))))

It isn't easy

Mameeskye

 

[Margaret W]

Dear Lindsey,

No, I have nothing to add either, but you have not let anyone down. Getting angry and frustrated now and again is human - you now know it isn't the best thing to do, but hey! when do we all do the best? We do OUR best.

If your MIL remembers your outburst, just say "Yeah, I remember that, I'm sorry" and move on to something else to talk about.

I don't think it matters whether she get a diagnosis of a particular type of dementia, it is the management of the symptoms which is important, and that's the same for all patients in the same state.

Best of luck,

Margaret

 

[Taffy]

Dear Lindsey, welcome to TP
Sorry that things are so hard for you and by the replies I hope that you can see that your not alone. Money disappearing seems to be a big issue among sufferers and not at all pleasant for the accused . Don't be to hard on yourself for the outburst, they happen from time to time, it's so hard at times to cope. You have received good advise here and as others have said, you can only do your best.

We have a 7 month old baby son and a 5 year old daughter.

I really admire you caring for such a young family and trying so hard to cope with your MIL. I hope that things somehow become easier on you and your hubby. Take Care Taffy.