I can’t work out what stage mum is at.

[irisheyesaresmiling]

Hi all,
I hope everyone is finding a way to cope with caring for their loved one. This forum, even reading posts that are not similar to my experiences so far, are reassuring. The support from others is really touching.
My questions concerns the stages of dementia. I’ve posted a few times about my mums behaviour, but more specifically the negative feelings it is triggering in me. Today, due to the incessant scratching and moving and rubbing, I had to walk away out of fear of actually grabbing her and shouting WILL YOU SIT STILL!!!!!!!! I’m not proud of it. I know it’s not her fault, but we have to keep her occupied every minute or it all starts again. She has declined considerably over the last couple of months. She does not know know who we are, frequently asks to go back to ‘her’ house ( we’ve lived here for 30 years), she doesn’t know her way around the house, she doesn’t understand the tv etc. Now when we are out, she walks two steps behind, so I’m constantly looking backwards! If I slow down for her to catch up, she slows down too. :? She has absolutely no sense of danger. When crossing the road she walks well then does a weird step that puts her in danger! She can’t speak coherently most of the time. She has to have help showering and be given instructions to clean teeth etc.BUT, she is not incontinent
Does any of this behaviour ring any bells? Her day care centre said she is ‘a good bit on’ but others say she isn’t so bad!!

we don’t know !!
Sorry for rant.. I had intended to write two questions!

 

[margherita]

Your mum is undoubtedly at an advanced stage of dementia, but I am afraid it isn't possible to be more precise.
I think your mum's situation is similar to my husband's. While his mind is completely gone, he is still physically fit and can eat the food I give him , wash and dress with some help from me.
He can't understand anything I tell him or follow very simple instructions . He doesn't often know who I am and thinks this isn't his home.
I have always identified the last stages with lack of mobility , inability to swallow food and incontinence. So I think my husband is still at a middle / advanced stage

 

[Linbrusco]

My Mum is considered end stage Alzheimers but not end of life.
For just over 2 yrs, no mobility, no speech ( only sometimes a Yeah when saying her name) totally incontinent, no mental cognition at all, sleeps 23hrs+.... or awake with eyes closed. You cannot wake her or get her to open her eyes. She will only do it of her own accord.
She can barely turn her head, but will cross and uncross her legs, scratch her head, and at this stage still opens her mouth for food and drink but is starting to cough more when doing so.
I would consider your Mum at moderate to advanced stage.

 

[Helen10]

What I’ve found really difficult to get my head around is that it depends which bit of the brain the dementia is affecting. For years, mum would ace all of the tests and ‘seem’ as though she was absolutely fine. But if you spent more than 30 minutes with her you would know she wasn’t. The nurses have told me mum is in advanced stages and I would say she is in stage 6/7 if you read things online. However, mum can also toilet and wash, eat unaided etc. My personal opinion is that it also depends what the people around the person can cope with and how the dementia has attacked the brain. You could be advanced in something but not in others.

I often get frustrated with mum. That’s because we are human.

Sorry my words aren’t of much use. Just know there are people here going through the same things you are.

Hx

 

[Duggies-girl]

My dad followed me like that, if I slowed he slowed, he was always behind me. I think that this is a fear of losing you so they stay right behind you always keeping you in sight. My dad was doing this in what his consultant called 'early stage dementia' but he was always coherent and knew who he or I was.

He declined after he had pneumonia and sometimes didn't recognise where he was (in his own home) but he always recognised me, he also took himself to the bathroom without problem. He didn't make end stage which is generally considered as immobile, incontinent and without communication so your mum probably has a way to go. I am sorry if this is not helpful.

 

[northumbrian_k]

Yes, all of these things sound familiar from my experience but, as others have said, there is no real way of saying what stage she is at as dementia affects people differently. Behaviours that appear early in some people may not appear until later - or not at all - in others. It was my wife's habit of always walking behind that led me to lose her on a busy shopping street one Christmas eve. We had to take care crossing roads as she would berate drivers for driving perfectly sensibly and legally. She would say very loudly "she stinks" if a lady (or a man) wearing perfume passed us in the street. I stopped cringing after the first few times. She has many repetitive traits and when she was at home (she is now in residential care) it was very hard not to comment or try to stop them. I soon learned that it was pointless to do so. Things change over time as the disease progresses - rarely for the better - although sometimes (as with my wife) leading to a more peaceful and apparently contented stage. She is considered to have an 'advanced presentation' but remains mobile, can read, speak coherently and repetitively, sometimes understands what I say and is still continent.

 

[karaokePete]

As others have indicated, the stages are fluid and individual. Having said that I found a site that is quite detailed so I use it as a guide when trying to evaluate my wife. It can be found with the following link
Seven Stages of Dementia | Symptoms, Progression & Durations (dementiacarecentral.com)

 

[Thethirdmrsc]

Thank you for the link @karaokePete my OH appears to be a moderate, and very similar to you @irisheyesaresmiling he is not incontinent but urinates all over the loo. I can’t give him any tasks to do as he just doesn’t understand. He follows me everywhere, doesn’t sleep during the day, and is often up at night. This morning he asked me what sort of house this was, I think he thought it was a hotel. He frequently asks me if there is someone down there for breakfast!.

 

[Jaded'n'faded]

I always wanted to know where mum was 'up to' as well and found the Seven Stages very useful (Link posted earier by Pete.)

However, looking back, knowing made very little difference - she was as she was and continued to deteriorate. I think the answer I really wanted to know was, 'how long will this go on?' Watching mum go downhill was awful and I just wanted it to end. Every visit was worse than the previous one and I needed/wanted to know when it would end for my own sanity. When you're in the thick of it, it can seem like an open ended sentence for everyone involved.

But no one can tell you that of course. Dementia causes a continuous downward spiral but the length of each stage varies and only 'typical duration' is given in the Seven Stages. It also depends on co-morbidities, accidents (like falls) and a host of other things, not least covid.

So although you may get a good idea of what stage your mum is at, no one can really tell you how things will progress for her - every person with dementia is different.

Perhaps it would be useful to consider what your 'line in the sand' would be, what you could cope with. For many carers it's incontinence and/or lifting the person, or dealing with aggression. When you have decided, stick to it and start to research care homes in good time. Caring is about getting the person the help they need, even if it may not be what they want. Take care.

 

[Sarasa]

I too found the seven stages document useful, though everyone with dementia is so different. My mother and mother in law are the same age (93) both were intelligent women and both have vascular dementia. They have both declined a lot over the last ten years or so but they have presented in very different ways. My mum lost empathy really early on, whereas my mother in law still had a lot until very recently. MiL is now incontinent, whereas my mum isn't. In my opinion a lot seems to depend on the underlying personality of the person with dementia.
I agree with @Jaded'n'faded about deciding what your line in the sand will be, though you may find that line shifts as you approach it.

 

[Henny2020]

Thank you so much for this, weird reading it as My Mum has had some of these symptoms for years, others have only just started.

Today was a new symptom of coming downstairs and asking me where all her belongings where, I must have moved or hidden them. I guess that's the new start to my day for a while, even though nothing is missing and i haven't hidden anything.

 

[deepetshopboy]

Thers a fisher dementia scale someone told me about it yrs back on this forum i think its american i googled fisher centre Alzheimer’s stages i found it upsetting but a wake up call on what stages /to expect id say my dads now 6 a 7 e or something being end stage

 

[irisheyesaresmiling]

Thanks so much for your replies. We are having a needs assessment in a couple of weeks so hopefully it will give some clarity. You know I never quite understood how difficult it was for dementia carers and suffers. I think sometimes it is mostly portrayed as ‘sad’ and ‘cruel’ which of course it is, but it’s also frustrating, exhausting, stressful and never ending. ❤️