Dementia – worse in the morning?

[Crengles]

Hello. My mum has vascular dementia which came on very quickly and severely (although she refuses to accept her diagnosis).

Unfortunately she lives alone as I live and work in a different part of the country.

The mornings are the worst time for her. On a daily basis I get several morning calls where she is very distressed. She is aware that her memory is failing and is totally fed up and desperate about it.

She keeps repeating "what is wrong with my brain? What can I do about it?" etc

Has anyone experienced similar/found ways to lessen the distress, particularly in the morning?

 

[Crengles]

Cheers Rob. You could well be onto something with the dehyration. I will talk to her GP about anti depressants also

 

[Crafts101]

Hello too
Came looking to the DTP with a similar question. Mum has been experiencing bouts of what she calls 'lightheadedness'. These are always in the morning but can continue on past lunch. She has a cup of tea each morning before getting up and about 30 mins in bed to gather her thoughts. Then she can get up and be fine for breakfast, I can leave for work all seeming fine, but then get the call asking for me to go back. At first I took her to the gp to rule out any infection, medication issues etc. All tests were fine. We were then in the process of waiting for her diagnosis from the memory clinic which was delayed as the consultant was off on long term sick leave(?!!) the gp was aware of this and trying to chase this for us to no avail.... However, we were all fairly sure it was dementia just not which sort.
The light-headedness continued on and off and at one stage I was there when it actually happened rather than relying on mums attempt to remember what the symptoms are! She goes very vague and unresponsive briefly, with lack of mobility and 'heavy' feet as we call it. She will start to come round and more responsive, but then become very agitated and start to have what I would describe as an anxiety attack? Which will. Lead to her shaking and being very upset. In full they can last a couple of hours until she is relatively calm once more. She will sometimes go back to bed for a while, but may still wake up agitated and upset.
Since this began back in June, we have now had the diagnosis of alzheimers with vascular and mum is now on her first 3 weeks of donezepril 5mg,to increase to 10mg if there are no side effects. She takes it in the morning after breakfast. As she had the light-headedness before the medication I don't think it is that causing it. The bouts seem to be getting more pronounced though. The thing is by later in the day she is 'over it' and forgotten all and often then has decided to get up, get changed and go out!!!
I can have taken 4 hours off work in the morning as mum is not well, settle her and go into work to have her arrive at work later that same day to 'call in' to see everyone, as if nothing had happened that morning when she was pleading not to be left alone, was obviously distressed and yes very much was not functioning.
Thank goodness my work is understanding of it all so far as I have had to take a lot of emergency leave since this all began 3 months ago. I live with mum and we have no other care assistance so far as of course, even after the diagnosis mum is adamant that there is nothing the matter with her.
Could this be a progression of the VD?
I do wonder if we could have another ct scan now, would there be a change from the one taken back in April?
Could this be a downwards dip in the VD from the plateau she had been on?
Could a change in the time she takes the donezepril help, if she took it in the evening instead would it make a difference more in the mornings, but as that is for the AD and this is possibly the VD, will that be no different?
Sorry a long post, but new to this and not sure now who could help or answer these questions as we are only now getting assessments and contacts now that we have the diagnosis......
A steep and probably long learning curve.

 

[TNJJ]

Hi.Dad has VD .He is ok in the morning but is on a downward curve after lunch.He starts sundowning about 14.30 but because he is not mobile (wheelchair)he continually fidgets.He used to feel light headed and the doctor diagnosed Vertigo.When he goes out he has to have sickness pills as he cannot tolerate motion now..He has “heavy “feet when he walks with a frame.He struggles and has collapsed on me so I tend to know with him it is not going to be a “good walk.But everybody is different.

 

[canary]

My MIL (Vas dem) used to phone OH and I up saying that she felt so ill, so we would go round to her home and she would be all smiles, illness forgotten. Her GP thought that she was having panic attacks because she was frightened with being alone. Could it be something like that?

 

[Crafts101]

Early on the gp thought mum's condition could be due to an inner ear problem/balance issue but despite the pills prescribed it doesn't seem to be better but getting worse? As yet we don't seem to have been affected by the sun downing effect, in fact if anything mum improves as it gets later in the day/evening?? But as you say everyone is different. I think the only thing we are all in harmony with is trying to figure this damn disease out. Dad passed 12 years ago with cancer and that was long and hard but somehow you felt it was something you could try and 'fight' with regular check ups, appointments and treatments. As hard as that was at times. Dementia though for us seems as if we are afloat, given a diagnosis as though someone has thrown a float, but no one is sending out the lifeboat for us, we just have to see how long we can last and navigate alone in the open sea!

 

[Crafts101]

Yes @canary I did think it could be panic attack/anxiety of being alone but I suspect it is actually that mum is having 'blank' moments possibly combined with TIA s. Something triggered it quite suddenly as of a particular date. But then what do I know really. I am hoping to try and sort out some company for mum in the mornings - if I can figure out how to source it. It's just the emotional impact of the calls when she sounds so distressed. That just isn't mum. She was never needy, always someone in control of things, caring for others, independent and ironically someone with excellent health - until now. As I mentioned before, once she was 'better' yesterday she resolved to get her 'hat & coat' on and get off out by herself to prove she could. I have to admire her determination. The thing is though she is no longer 'mum' now - she is 'Pam' :the empathy is no longer there, her focus is narrowed and she is it would seem living very much back in her younger days as very rarely does she talk now about times from current family - dad, my brother or me. It is her parents and her home that she wants to talk about and return to:safety and comfort in these all too confusing times. Understandable really but not something I, as her daughter was expecting to experience. But then I do get to see another side to mum that I probably never would have - silver lining in the storm clouds that are gathering perhaps?

 

[canary]

Yes, @Crafts101 the change in personality is hard to watch and it is something that most people who have not previously known someone with dementia is not aware of. My MIL was a fiercely independent lady whose focus was usually on others. It was hard to see her too become needy and manipulative. I was never her main carer, but I used to sit with her for a few hours a week and I would see her flip-flopping between the "old" MIL who was caring, generous and independent and then see the "new" MIL who was needy, whinney and could be quite nasty if she didnt like what I was suggesting. I found it really confusing as it was my first experience of dementia and did not realise that this was par for the course.
Looking back now Im sure that her levels of confusion varied during the day. When she was on her own and got increased periods of confusion she became frightened and wanted someone else around - leading to the panic attacks

 

[Crafts101]

Morning @canary
Yes that sounds like the development I have here. The thing I am worried about at the moment is there seems to be some sort of incident and change that occurred quite suddenly back in June and now I have big challenges in the mornings with her 'lightheadedness' bouts, complaints of smells that are not there and which are now accompanied by shaking which I have not seen before. It has now been every morning this week. By later in the day she picks back up and you probably would not think it was the same person. Apart from all the other symptoms, which don't go away! Awful to say, but I don't want the hassle of the gp, which takes an age to see, by which time she will be OK, will get agitated and upset about going, but then I am not a qualified medical person and I worry I am ignoring something that should be looked at. Tried to ring the Admiral Nurse helpline but can't get through, as I wanted to get some advice on this. Not sure who else to contact?

 

[Sarasa]

My mother has Vascular Dementia, and it's not so much that her personality has changed but that some of the layers have been stripped off. She was always a tough, assertive, determined, woman who wanted her own way. Earlier on in her life she mostly got that by being funny and charming. In her job she often had to make difficult decisions, such as sacking people, but she always did them in a way that made the other person not feel demeaned. That has now all gone, as has any power of reasoning. All that is left is the determination to do what she wants, backed by aggression, tears and distress when she can't have her own way.

 

[canary]

The thing I am worried about at the moment is there seems to be some sort of incident and change that occurred quite suddenly back in June

Vascular dementia deteriorates in sudden "jumps" so that, unlike in Alzheimers where the deterioration is more steady, in vascular the deterioration is more "step-wise". She may have just had a "step" down.

 

[Crafts101]

Vascular dementia deteriorates in sudden "jumps" so that, unlike in Alzheimers where the deterioration is more steady, in vascular the deterioration is more "step-wise". She may have just had a "step" down.

Thanks @canary
That is what I suspect, but as she is diagnosed with mixed Alzheimers and Vascular you just don't know which is which in the mix. At the end of the day all we can do is the best we can I suppose.

 

[Crafts101]

My mother has Vascular Dementia, and it's not so much that her personality has changed but that some of the layers have been stripped off. She was always a tough, assertive, determined, woman who wanted her own way. Earlier on in her life she mostly got that by being funny and charming. In her job she often had to make difficult decisions, such as sacking people, but she always did them in a way that made the other person not feel demeaned. That has now all gone, as has any power of reasoning. All that is left is the determination to do what she wants, backed by aggression, tears and distress when she can't have her own way.

Yes @Sarasa
The striping away is a good description. I believe the thing I noticed the most was her lack of empathy. That was the key thing for me once it went. It's when you realise just how many 'layers' make up each individual personality and how they all need to be there, like the bark rings on a tree, to ensure you are you.

 

[TNJJ]

Dad’s balance has got worse alongside his dementia He also has a slight tremor in his right hand.His stroke was on his left side.But the tremor is only when he gets up,first thing

 

[Crafts101]

Hello @TNJJ
Mum is physically shaking/jerking as if in shock, which is actually what it could be now I think about it. She was perfectly fine when she got up. Of course confused about her clothes and what she was meant to be doing... But got up and was moving around, walking fine, and then complained of lightheadedness again, needed to sit down and then went vague and started to shake. She is talking ok, no slurred speach, temperature is fine, not clammy to the touch, no facial change/drop - so trust no stroke in the typical sense. However, she keeps complaining of the air not being right. Smells that she says are there (farming) - we do love in a rural area, and can get that, but not today as the air is clear and good.??? She went to bed and has dropped off for the last hour or so. Just taken a cup of tea, drowsy but better however the 'smells' are still there?!

 

[Louise7]

Mum had episodes of unresponsiveness and shaking, which didn't last very long and TIA's (strokes) were ruled out. Tests identified low blood pressure and a heart problem but it took a while to discover the problem as the episodes were intermittent so weren't always being picked up on an ECG. It's worth mentioning the symptoms to the GP, particularly as Donepezil can make existing heart problems worse and the episodes have got more pronounced since taking the medication.

 

[TNJJ]

Hello @TNJJ
Mum is physically shaking/jerking as if in shock, which is actually what it could be now I think about it. She was perfectly fine when she got up. Of course confused about her clothes and what she was meant to be doing... But got up and was moving around, walking fine, and then complained of lightheadedness again, needed to sit down and then went vague and started to shake. She is talking ok, no slurred speach, temperature is fine, not clammy to the touch, no facial change/drop - so trust no stroke in the typical sense. However, she keeps complaining of the air not being right. Smells that she says are there (farming) - we do love in a rural area, and can get that, but not today as the air is clear and good.??? She went to bed and has dropped off for the last hour or so. Just taken a cup of tea, drowsy but better however the 'smells' are still there?!

Dad has this sometimes.He seems to smell”smoke” even though there isn’t any.

 

[Crafts101]

Mum had episodes of unresponsiveness and shaking, which didn't last very long and TIA's (strokes) were ruled out. Tests identified low blood pressure and a heart problem but it took a while to discover the problem as the episodes were intermittent so weren't always being picked up on an ECG. It's worth mentioning the symptoms to the GP, particularly as Donepezil can make existing heart problems worse and the episodes have got more pronounced since taking the medication.

Thanks @Louise7
I think it is perhaps time to get mum back to the gp and checked out again. Just good to know it is something others have experienced as quite unsettling to see happen, but slowly getting used to it and learning not to panic myself.

 

[Crafts101]

Dad has this sometimes.He seems to smell”smoke” even though there isn’t any.

Thanks @TNJJ I had read about pwd 'seeing' things but not the 'smelling' good to know.

 

[TNJJ]

Thanks @TNJJ I had read about pwd 'seeing' things but not the 'smelling' good to know.

Dad also has AF .