I'm not sure whether there are stages. Mum seems to be fine, then she gets ill for a few days or weeks and goes backwards in her condition. She'll recover and be better for a while ,but not get back to quite where she was before and then later she'll go downhill again. Mum varies from day to day, and even the matron said that she never knows what to expect from Mum. It is like she is always going a few steps forward and then few more backwards, sliding gradually into a general decline.
She is still the same person, but a mere shadow of her former self and very sad that there is very little she can really do now. She's just fed up with being ill and confused about where she actually is and why. It's amazing that she can still make little jokes and word plays. I'm trying to make the most of some quality time with her in the NH while she is still able to hold a sensible conversation. I've been reading "Nan's Story" which she wrote on her computer, about her life and memories and it is sad, but also quite funny in places. I can almost hear her voice when I read it and then remember things she has told me about.
She's quite well at the moment, but I keep thinking that things might get worse again soon. I feel so helpless not knowing what I can do that will make a difference.
You make the difference by not giving up - by being there- by making the most of the time you have. We cannot stop the decline, it is going to happen - but the decline does not have to destroy the relaionship.
Your post just made me feel so sad because what is happening to your mum is happening to mine - what you have written about could be what we are experiencing to the letter. It is really upsetting to watch my mother go from being a vibrant energetic lady to being a shadow of that. At the moment we are going through a decline and every time this happens its a real struggle for her to claw her way back up threw the fog that surrounds her all the time.
I dont know if your mum does this, but when she is on the phone to someone (I always dial the number) she can sound totally normal as she responds appropriately, but 10 seconds later she has forgotten the call. She seems to have a tremendous ability to cover up her confusion and amnesia which is really sad as it must be very hard work for her.
I try to keep normal things going as you do, have her home for lunch from the care home on a Sunday, take her shopping (occasionally) etc but gradually she is withdrawing from all that and is quieter and more muddled at times than she was.
I think I just wanted you to know that you are not alone - I really empathise with how you are feeling - its a lonely place for us but must be a million times worse for our poor mums.
Unfortunately Mum's hearing is poor and she is unable to use a telephone. She had a special one at home for the hard of hearing, but she seemed rather reluctant to use it. Since she broke her hip she has been immobile and she hasn't been out of the NH. She was so unsettled at first, that it seemed unwise to disrupt her routine. I've taken her into the NH garden which she enjoyed and we found 20 different flowers, but most of them were weeds. There was supposed to be a new Sensory Garden created for the residents this year, but because of the hose pipe ban, they decided to postpone it until next year. I just wonder if Mum will still be here next year, or will still be able to appreciate a garden.
I'm going on a writing holiday next week and my special project will be to write some memories of my Mum for my children and (hopefully) my future grandchildren. I've found some writing of Mum's on her computer which is all about her life and so I'd like to add some of my own thoughts and poems that I've written about her move to the NH. It will make me feel sad but I think I've got to do it now while she's still here. We had a lovely browse through a family photo album and it wa amazing how much she remembered. Mum called her writing "Nan's Story" and it was about 17 pages long and made fascinating reading.
She was born in 1925, but can remember the separate workhouses for men and women when she lived in Hazelville Road in North London.
Vascular Dementia seems to be very unpredicitable and not as common as other types of Dementia. People don't seem to understand the problems sufferers have, because it is less well known. I feel sorry for anyone who is still having to cope with it at home, because the mood swings can be very upsetting for everyone.
As you all say its a downward slide and its dreadful to watch the person you knew disapear .
Mothers neighbour said in an e mail today "mother is nasty to everyone if thats a comfort " and "just what do the doctors call a crisis "
Well Mothers gas oven is leaking and unsafe and since she cannot manage anything new i guess that will precipitate a major slide .
Add on age is against her being 90 next month
The one thing I have pieced together is the incidents of the past 5 years all add up to prove the doctors were either ignorant or stupid or downright lying and that makes it worse because if we had known the truth we might have persuaded Mother to move into more sensible accomodation and make different decisions
It took my mother about 6 months to begin to settle in the care home - I never knew who I was going to find when I went in, it varied so much every day. Some days she seemed content and others she was furious that she was there and being really nasty, especially to me. I know it is the disease talking, not her, and I am able to be rational about it and not get too upset. The carers are very good with her.
She had a couple of falls and went off her legs which is what precipitated her move to residential care, and they have done very well to get her going again with a frame or a stick (with supervision) which does make it easier to get her out and about although I dont know how much longer she will want to do that.
Now she is worse she seems to have "given in" a bit and seems calmer although she gets very tearful and distressed about her condition. I know it sounds strange but because she has fairly good awareness she does get more upset - I think that with other forms of dementia that awareness is not so acute. I dont know if this will gradually go - does anyone know the progression of VD? I just cant imagine where this is leading.
I think she is having TIAs - I have witnessed a couple of small episodes and I noticed that she has bitten her lip which may indicate she has had one maybe in her sleep.
I think you are right Kayla, in that people generally have a perception of AD and think that all dementias fit that picture. Mum doesnt really - she can still have a good conversation although doesnt remember it, and her long term recall is accurate generally. She recognises everyone that comes to see her even if she has not seen them for ages.
Its dreadful to see her like this and as you all do I am trying to keep normal things going for as long as possible - its the least I can do for her.
Dee, your Mother might also be having epileptic seizures (the lip biting is more typical of that than a TIA where everything tends to go slack). I've just been through this with my own Mother (although in her case the seizure was a Grand Mal, and couldn't be mistaken for anything else). I have been told that as the brain heals following strokes (my Mother's problem) the healing lesions can cause epilepsy.
My Dad had a stroke when he was 78 and he lost his speech, became weak down one side of his body and needed a catheter for 18 months until he was able to have a prostate operation. After three weeks in hospital, where he was treated, he returned home and recovered his speech and movement. He had a reasonably good quality of life, until his heart and kidneys failed and he died at 84.
If Vascular Dementia is caused by mini-strokes in the brain, I really can't see why they can't be treated like my Dad's stroke effects were treated and more or less cured. Perhaps the strokes are of a different type, or they are not usually noticed early enough?
Also, why do the medical profession seem to have such a problem recognising vascular dementia? It looks as though the Mums described on this thread have quite a lot in common, and the dementia is only affecting a few aspects of behaviour, leaving many other things in tact. This is probably why it can be so difficult dealing with people with vascular dementia. In many ways they are very aware and know that something is wrong but are afraid to admit it ,even to themselves.
I think it a rather frightening disease, as it is so unpredictable and the person just feels so totally alone and lost. It is hard to adapt to the ever changing behaviour and needs of the sufferer and yet they can appear so normal at tmes. I sometimes wondered if it was me who was getting confused.
Thankfully, Mum is being well cared for in a good NH, and I can just enjoy quality time with her, instead of having to sort out non-existent problems or rushing to the hospital after yet another a fall.
How old is your mother Dee?
Have you managed to sort out your mother's gas cooker, Helena?
I wish that I had known about TP when we were having so many problems with Mum taking her medication properly and having hallucinations. There may not be any answers to the problems, but it does help to know that we are not alone.
I think you are right Kayla in that VD is more distressing all round both for patient and the relatives
The plumber was dealing with the Gas cooker situation and I dont know exactly what is happening , it may be he is trying to get parts .
I do know that if the cooker is terminal and we need to replace it that will be the end of Mother living alone .
She simply cannot cope with anything new or different at all
Her old Washing Machine broke ( lousy awful thing and very difficult to operate )......i was given a lovely nearly new one for her thats so easy but she does not have a clue no matter who tries to show her turn one dial and push just one button
So I know if she had a new cooker we would be in same state
Kayla, my mum is 78 now and has been having problems for three years. It happened almost overnight and coincided with her moving house to be nearer her partner (she only moved 5 miles). I dont know whether the stress was an issue or whether it was coincidence but literally over those two days she totally changed - she had virtually no short term memory, was disorientated etc. I am sure you both know how it is. Over the next year or so, she improved a bit, failed a bit etc etc. Looking back now I think she must have had a mini stroke at that time and the stress of the move exacerbated the effects.
Her GP was a total no helper - very patronising to me when I contacted him and I nearly had to have him by the throat to get her referred. The diagnosis was very woolly - "could be AD could be VD, here have some Aricept, and by the way I retire tomorrow" - by the consultant and I really felt it was up to me to sort it out. Whilst I am a nurse, I am not an expert in this at all so its not been much help although at times I can put my nursy head on rather than my daughter one which makes it easier.
She and her partner struggled on, Helena you will be going through this by the sound of it, knowing that your mum needs more care but not wanting to force the issue and waiting for the phone call that you know is coming. I was pretty prepared for it and last summer he phoned (I live 150 miles away) and said that he couldnt cope anymore. It was a terrible few months as she was so distressed, very lucid about many things and so angry with me and everyone else.
As you say Kayla, your mum is in a good home (as is mine) and you can spend quality time with her. I see mum at least 5 times a week and even if we just sit and read the paper, ring her partner or other friends, we are together and I value that. I still feel angry this has happened to her - only 6 years ago she was getting her MBE from the Queen - but I suppose this is the card we have been dealt. Kayla you hit the nail on the head when you said you wondered if it was you who was confused - I still feel like that sometimes and wonder if I have done the right things for her.
She gets so frustrated, although that is reducing now, about things like not being able to understand the remote control for her TV. What was really sad was that she used to have her own business doing soft furnishings and has always made clothes etc. I gave her some really simple sewing the other day and she couldnt remember how to do it. We both wept at that one I can tell you!
Anyway, thats it - I appreciate the chance to discuss this with others who understand as its so different from AD that its hard for others to appreciate the difficulties.
One of the things that always gets me about stroke induced dementia (be it mini-strokes or one or more major ones) is that you can almost track where the damage is - the deficits are so specific. Certain areas are fine, and then there will be big "holes" in capabilities. In Mummy's case, most of her problems revolve around her inability to learn anything new, compounded by the fact that she's never been particularly adept (or for that matter interested) in things of a practical nature. Unfortunately, she has always been a great reader, but the strokes not only damaged her vision, but also some how affected her ability to process information so that even reading to her is an exercise in futility. She has a recorded book collection that would be the envy of many libraries, yet now seems to find even those tiresome. I think most of the time she is bored - not being able to remember means you feel you never do anything.
The other day my Mum complained (in a nice way) that she didn't have anything to do in her NH. I played dominoes with her and her friend and after just one game, they both fell asleep! In her imagination, Mum is looking after some boys, by taking them to the park and she talks about things, but I have no idea what she actually means. Her short term memory is very poor now. Almost overnight , Mum forgot how to use her washing machine controls, her video recorder and her computer. It was sad to see her so annoyed with herself.
I do feel very sorry for you Helena, because it is quite distressing when you know that someone should be in a Care Home, and it is just a matter of time, before it will become an absolute necessity. The transition period between coping (or struggling) at home and needing 24 hour care is very hard indeed. It is also hard when they move to a home and are so disorientated.
Mum is settled now, but I was very surprised to learn today that she has actually lost 2kg since she's been in the home, despite eating a good balanced diet and she also says the food is very good.
I think vascular dementia is different from Alzheimer's dementia, and presents different kinds of problems, but I wouldn't say that it is worse, as I have no way of knowing. It probably depends on the individual.
At least my Mum still has her sense of humour. What did your mother get her MBE for, Dee?
Does your Mum watch TV, Jennifer?
Unfortunately, no she doesn't watch TV, because 1) She's never been a great TV watcher 2) her stroke robbed her of half her visual field 3) She never remembers to put her specs on so the screen isn't very clear and finally 4) TV? What TV? How do I turn this on?
My Mother also still has her sense of humour as well, thank goodness. Also, a song for every occasion (she sings to her carers!) My DD has taken some college courses on memory, and she tells me that musical memory is in a very specific area, which may account for the fact that she can always pull up a suitable song, even if she can't remember what she had for lunch (or even if she had it).
Regarding the weight loss - I think that might be something to do with regular meals, and rather less in the way of "biscuit breaks". Not that Mummy has lost any weight, and in fact seems to think she's a size 16 (not for a very long time), but that seems to go hand in hand with thinking she's in her 60's (She's 89).
Mum got her MBE for being a magistrate amongst other things but she has almost forgotten about it and shows little interest in it. At the time she made a scrapbook of the cards and letters she was sent and sometimes we look through that.
Like your mother Jennifer she cannot concentrate to read or even watch TV and I am sure she must get bored just doing nothing. She is not keen on the activities in the home although she used to join in them but rather halfheartedly. Mind you I am not surprised as I didnt think they would be her thing. What she likes most is talking to people and the carers are good at spending time with her or putting her with other ladies who can hold a decent conversation with her.
Yesterday she was pretty knocked off but really perked up when we phoned her partner and had a long chat with him which sounded pretty lucid. As soon as we rang off though she had forgotten.
My Mum is 85 and has Vascular dementia.
reading your postings makes me realise that my Mum is in a similar state.
She is now unable to read or absorb information from books t.v. or radio, unable to learn new skills or remember some past ones like changing the t.v channels. Things seem unfamiliar to her and she says that's not her coat, bag, saucepan, etc.
She lives in sheltered housing and my brother comes in to cook a meal every evening as otherwise she wouldn't eat.
What really scares me is the hallucinations & conflabulations that she has the latest is that my brother who is happily married is having an affair with her C.P nurse, this is one of many things she has come out with recently, I really don't know how to handle it, is this usual with vascular dementia ?
My Mum told me that she went on a boat on the sea with my Dad (who died in 2000) and they had a lovely time. Then she said that they shouldn't have spent all their money on a boat, when that is the last thing they'd have bought!
There is no dividing line between reality, dreams and imagination, so you just have to try and guess the truth. Hallucinations can be very frightening for them, so perhaps living alone is not the ideal situation to be in.
I don't know whether "usual" is the right word, but I think it's pretty common. Actually, my Mother hasn't had either hallucinations or delusions like that - she becomes fixated on something (for example the automatic fan in her kitchen) and even if you tell her what it is, the next minute she's off worrying what it is (she seems to think it's running water). Days this went on then suddenly, that was replaced by something else to worry about. I think your Mother's delusions about your poor brother and the CP nurse is probably because she's fond of the CP nurse (and your brother, one assumes) and so she connects them together. Of course, that could work the other way, and if she dislikes the CP nurse, it could be that she thinks she's plotting against her (mummy does show signs of paranoia sometimes!). I think for the sake of your extended family this is probably one occasion where you shouldn't enter into the delusion - just tell her she's mistaken, although if she interprets that as arguing, maybe you'll just have to bite your lip (you'll find that lip biting is an ongoing medical problem for carers of people with dementia!). I would warn your SIL though if she doesn't already know.