Forum > Health and Disability

Coping with dementia in a parent


My mother has increasingly worsening short term memory loss. Her behaviour has become erratic, her eating has become secretive and odd, and her balance is unsteady and she has had a number of falls requiring hospital treatment.
This has been going on for several years and both my sister and I have spoken to my mum about her memory problems and secretive eating on a number of occasions, but she refuses to acknowledge that she has a problem and won't talk to the doctor about this.
The situation is made harder in that my sister and her family live with my mum, so take the full brunt of my mum's behavioural changes and temper tantrums. I've spoken to mum's GP a couple of times in the past to pass on our concerns and to ask them to assess mum's overall health and see if there was anything else causing the memory issues etc. At present, the GP doesn't have my mum's permission to share medical information with her daughters, so all I can do is present the doctor with my worries. I never get to hear the outcome.

Yesterday my mum came to visit me with my aunt, her sister. I had forewarned my aunt that I was going to tackle mum about her memory problems and between us we worked out a game plan. It went as previously, with mum denying she had a problem,  while myself and my aunt provided specific examples and the benefits of early diagnosis.
Dementia runs in our family and my aunt is participating in dementia research to monitor her memory and if anything is detected, her daughter will be notified. My mum sat blank faced throughout, then burst out, "I'll just put myself in a home, then nobody will have to bother about me ever again! " This isn't the first time she's said this to me, but it's the first time my aunt had heard it. She was shocked.
Obviously my mum is just saying it for effect, and my sister, myself, and my aunt strongly suspect that mum is depressed. I reminded her that nobody is saying she should go into a home, and why on earth would she want to go into a home when she didn't even know what was wrong with her, just because she won't speak to the doctor!  :f_doh:

As my aunt and I moved the conversation on to my gran, who had dementia, we talked about the hard life that she had growing up and how that affected her in later life. Anyway it diffused the situation and they left shortly after.

When she got home, mum sent me a text saying she would talk to her doctor as she doesn't want to be a burden. The text both relieved me that she would speak to the doctor, but the bit about being a burden really angered me. Which I know is unfair, it's just that she doesn't get why a diagnosis is so important for her health and treatment options.  :f_sadface:

I needed to offload the frustration. Thanks!

[/size][size=78%] [/size]

Sunny Clouds:
Having had a parent and three very close friends with dementia, plus three close relatives with it when I was a child, I feel I've a flood of things to say.  I can't get my head round how to be even vaguely succinct now, but I'll get back to you later or tomorrow.

Meanwhile, dealing with someone with dementia and/or with other conditions with symptoms overlapping with dementia symptoms can be a pain in the wotsit whether they recognise their problems or not, because of all the effects on behaviour, so have a big hug to be going on with.


Sunny Clouds:
Some general points on the developing dementia front.

To say the obvious, dementia is scary, not just in the symptoms but in loss of control over one's life.  Asking someone to get tested for dementia is a bit like asking them to walk into a police station and own up to a crime with a sentence of life imprisonment.

That being so, I think one thing that can make it easier is, if they'll let you (which they may not), to discuss what they'd like to happen as they get older, maybe talking about if they need help with mobility problems, sensory impairments, shakiness, general physical weakness, severe depression or 'other mental problems'.  If possible, focus on words like 'independence', 'supporting you' 'your choices' etc.

Some anectotey stuff that might or might not help to show different angles of what you may need to address regarding diagnosis...

Another thing is that what often gets overlooked (including, sadly, by some GPs, who are, like all doctors, trained to 'look for horses not zebras'), there are over a hundred dementias.  Obviously some of those are rare hereditary dementias that show earlier in life, but the key thing is that they vary, and even the most common ones (Alzheimer's, vascular dementia, Lewy body dementia are the ones that come to mind) can vary within each type.

A very close friend of mine started developing dementia in her early forties.  The GP's instinct was that it was an alcohol problem, but gave up arguing when she said she didn't drink.  He should have trusted his gut feeling, but asked himself what other causes might be.  Yes, it was me that, a few years later, 'internet diagnosed' it and sent her back to him.  She'd got Korsakoff's dementia, a vitamin B1 deficiency, usually in this country caused by alcoholism, but in her case caused by a foreign diet.

So it would be entirely possible for there to be disconnects between what different people think is amiss.

Then, as we all know here, there's co-morbidity.  But again, as a neighbour of mine sighed wearily when a group of us were discussing things not being taken seriously by doctors, you're not allowed to have more than one condition.  In my case, my doctor looked despairing when the gynaecologist put my mood swings down to my bipolar, because obviously it would be just coincidence if my sudden mood crashes happened to be just before the start of a perimenopausal erratic period.  No HRT for me, then.

There are symptoms that can be attributable to more than one condition but the jargon doesn't help.  On DLA to PIP migration, I mentioned attentional memory problems.  The assessor mentally translated this into 'mild cognitive impairment' i.e. early dementia and the decision I was sent said according to my GP I didn't have MCI.  My GP now asks when I have my routine reviews whether I've got any signs of dementia.  Aargh! 

So dismantling whether something may be a symptom of more than one condition can help or hinder, but if it's portrayed as "Well, it may be that it's something that can't be fixed, in which case what's lost by finding out, but if it can, e.g. drugs to slow the common dementias like alzheimer's and vascular dementia, or various less common ones, would a diagnosis help to see what might be done to slow it down?"

That being so, my dad was extremely difficult to handle and I had to work hard at giving him the impression at all times that everything I was doing, I was doing because he'd insisted on it (even if actually he'd wanted to argue about it).  I could do that because I worked my hardest to help him for as long as possible.  Even then, it was a strain.  Dementia did not bring out the nicer side of him, sadly.

So when I make suggestions, I make them full well knowing that reasoning and discussion just doesn't work with everyone. Sometimes, like Dad, it's about always having to feel you have the final say even if it means your decision is the opposite of what you want, but it enabled you to be seen to defeat the other person. 

Sometimes, it's about other things.  For me personally, it would be the terror of institutions whereas I kicked myself when Dad suggested going in a care home for not twigging that as someone who'd spent lots of time in hotels, conference centres etc. it would be fine.  By contrast, I very, very rarely stay in hotels, but have youth-hostelled and stayed in countless army barracks.  If you offered me a place in one of those modern units that combine a student hall of residence with sheltered housing for elders and a care/nursing home, I'd go for it.

Anyway, the shorter version is that you're not alone in finding this stressful, but sometimes there are little ways of making progress.

I think Sunny's practical suggestions in the first portion of her reply are excellent.

I'd agree that receiving a diagnosis of dementia when you're well enough to be aware of it would be absolutely terrifying and a good chunk of the population would avoid the opportunity of being so diagnosed. I'd ask what the benefits of a diagnosis would be and unless they're significant be prepared to wait a bit if it were me. Your sister though as someone living with her and more and more, perhaps caring for her, may want the diagnosis sooner rather than later to obtain help and support and that's up to her then maybe to work at that. As the non live in daughter your role could be to listen and provide emotional support to them all.

I really feel for you. Dementia is the most scary for the sufferer, in the early days before the advancement makes them unaware, but is also very scary for their partner and/or children as you worry so much about the future.

Such a hard time for you all, do bin any of my thoughts but hugs to you as you navigate this very difficult journey.

Thank you  both for your replies.
I hope you don't mind, but I have posted my response in the 3am board as there was info that I wished to keep within members.
Fiz, we cross posted so I haven't yet responded to you!


[0] Message Index

Go to full version