Hi not sure what are the first steps

[page77]

Hi
My mum (73) had a stroke last year, thankfully it was treated within an hour and mostly we got her back. Her balance is still an issue and some numbness, which means she has been stuck indoors. I don't have a car to take her around but I do as much as I can via taxis etc.

Anyway the last couple of weeks I have noticed some real memory issues. I don't know if I was blind before or not paying close enough attention. The shock moment was we were talking and she had completely forgotten about a family cat. I know it sounds like no big deal but we had that cat for over ten years and it was like it never happened, it broke me or made me wise up I don't know which. I said to her I was concerned that she would forget and so I have been asking her questions when we are together. We looked at old pictures and some she was perfectly fine with but others she really struggled to name, these were family members and she struggled to remember the name of my dog and he is like her baby too. Also she does repeat herself but only a little.

She is still really sharp she recalls her hospital appointments and she remembers things I tell her so if this is memory issues it is extremely early days. But she seems completely blase about the fact she couldn't remember things, if it were me I would be freaking out a little but perhaps she is downplaying it.

I know this could be 100 things she is on tons of meds for lots of health issues she is diabetic, high blood pressure, stroke meds etc maybe they are interacting badly, maybe her stroke did leave some brain damage we hadn't picked up on, it could even be just brain boredom from being stuck indoors not getting enough stimulation. Equally this could be the begining of something serious that I am gonna have to face like losing my mum in the most evil way possible.

Her GPs are useless it's like someone gets to a certain age and they just can't be bothered, getting an appointment is shocking and they won't do homework visits even though like I say she struggles to get out. But she has a stroke team appointment in May and I am going to go to the appointment and bring it up then. Hopefully they will order a scan check for brain damage and get us started on this journey to find out if dementia is what we are going to face. Is there anything else I'm supposed to be doing ?

I'm kind of lost and truly terrified. I have an older sister and brother but they don't care they have their own lives and so caring for our mum will be mine to face alone. My mum is married to a selfish man so he won't be very much use. My husband begged me to try some place like this to seek advice and talk to others who might understand what the steps are because I'm so broken. My mum is my best friend, biggest champion and hero and to lose her might actually kill me.

Any advice or even your own stories on what I might face no matter how awful will help at least prepare me for the future

Thanks

 

[Grannie G]

Welcome @page77

I`m sorry to hear how worried you are about your mum and how difficult you are finding getting help and support.

I think it`s a good idea to bring up your concerns at the stroke team appointment in May.

Make a note of all your concerns so you don't forget anything. If you can keep a form of diary between now and then, it will show the frequency of your mum`s difficulties and help the doctors understand the level of life changes your mother is experiencing.

 

[Sue741215]

Hi @page77. I am sorry to hear of your worries about your mother - it sounds as if you've both been through a tough time. I think your plan about going to the stroke appointment is a good one - it will give you some time to absorb the thought of your mum's memory problems and also to speak to experts as to whether the memory loss could be related to her stroke. If your mum does have vascular dementia, Alzheimers or similar development is usually quite slow so don't be too worried about any delays you might encounter unless you feel she is becoming at risk and unable to manage at home. If she does have one of these illnesses you will find the only way to deal with it is to deal with any problems as they arise, to help her live the best life she can and try not to think about the future too much. It is difficult to put those future fears to one side but practice helps and it is the only way you will manage the situation.

In the meantime i suggest you perhaps keep some notes on any unusual behaviour or memory loss to give to the stroke team and just continue to look after your mum as you are doing. If you have not got Power of Attorney in place this would be a good thing to do to in case your mum should lose capacity in the future. You may or may not want to keep browsing the site - it is full of useful information but in your current state of shock you might find some of it hard to deal with. There is lots of information on dementiauk.org and people you can call for support and information including Admiral Nurses though again you may want to leave it until you have a diagnosis. You are understandably in a state of shock and I think taking some time to let things sink in will enable you to get used to the idea and realise that you and your mum can face the problems ahead if only because you have no other choice. The obviously strong bond between you makes things both better and worse but the fact that you are seeking help early means you are doing what you can and will continue to do so - that is all we can do.

I hope that your visit to the stroke clinic allays your fears and if not remember you still have good times to enjoy with your mum.

 

[page77]

Thank you both for your advice. Keeping a diary is such a smart thing to do, will absolutely do that. I feel so torn I'm a mum of three and work part time so I fully admit I haven't dedicated the amount of time my mum needs from me. I get so caught up with work, family and after school kid commitments like clubs and homework. I will just have to work harder to be there to enjoy our time together but to also pay more attention for warnings that I must have just not been paying enough attention for.

 

[Sue741215]

We all feel as you do that we could do more but please don't put yourself down - you have an awful lot to deal with so please be realistic about what you can do. I got the impression that your mum is managing at present and your worries are more about the future but if she needs help now I suggest you call the Dementia helpline and get advice based on your mum's condition to see if any help is likely to be available while she is waiting for a diagnosis. I wish you well and ask you to remember that there will always be more that you want to do for your family but you can only do so much and remember to look after yourself as well.

 

[page77]

Thanks you are right this is all more future based thinking. As for now my mum is still independent despite what the stroke did to her she still does wordle and stuff like that and she cooks for herself orders shopping etc. I'm going to book time off work as soon as we are back after Easter holidays, for the stroke appointment, as apparently they were going to discharge her and I need to ensure they test her for any signs of dementia. Then we can take things from there. I guess being scared just brings out my need for control and so I start trying to plan ten steps ahead but you are all correct one day at a time.

 

[SherwoodSue]

I think you could be describing the early days of my mum. Strokes followed by a vascular dementia diagnosis. Mum had poor balance. She was on many tablets and following a review we took many tablets away and she improved balance wise.

Keeping notes is an excellent idea. Mums Vascular dementia hasn’t advanced horribly rapidly so try not to panic too much. Also Vascular D is different to Alzheimer’s in many ways.

Write down questions in add for the stroke clinic and make notes when they answer.
I think you will find this helpful

 

[page77]

Thanks for the help. What questions should I be asking? Ask me about Crohn's disease and I can write a dissertation (I have it) but Vascular Dementia or Alzheimer's and I have absolutely no idea what I need to know, to best help my mum.

Also if it's not too personal how long has your mum had Vascular Dementia? And how far has it progressed?

Honestly my nightmare is her not knowing me anymore. She has always been my best friend and she was a single parent in the 80s, which ain't easy at any time, but especially back then and then I got Crohn's at 16 and she basically had to nurse me for five years till surgery saved my life. We have been through so much together. I cannot imagine my world without her.

 

[Spottydog]

I think if you've noticed issues over the last couple of weeks it would be a good idea to get some blood tests done to rule out any other causes.

 

[sdmhred]

Hi @page77
my mum has vascular dementia …she’s now late stage but we’re probably 6 or 7 years in and for most of that she managed fine And was able to adjust her lifestyle- it’s hard but my message is also that I haven’t lost my mum - she’s changed in what she can do but she is still very much there ….in fact I have seen good bits - she’s actually more fun and a little more relaxed as some of her shyness disappeared- it’s not complete doom and gloom.

I’ve kept a diary thread for the past year or so Our Bitter Sweet Magic moments - have a read!

 

[page77]

I think if you've noticed issues over the last couple of weeks it would be a good idea to get some blood tests done to rule out any other causes.

The reason I haven't tried her GPs is simply they are awful they havent bothered to have someone come in to her to check her diabetes even tho it has been requested so many times, as it's hard for her to get out to go for a blood test. Thats why I am gonna wait for the stroke appointment in early May as I will bring up my concerns then and I figured they can book bloods and scans etc then. Im not giving up hope it is just too many medications interacting badly or some residual damage not realised from her stroke. But when I realised my mum was forgetting things I kind of spiralled a bit freaking out and thinking the worst and so my husband told me to come on here and seek advice and just vent my fears as only you guys can really understand what this feels like.

 

[page77]

Hi @page77
my mum has vascular dementia …she’s now late stage but we’re probably 6 or 7 years in and for most of that she managed fine And was able to adjust her lifestyle- it’s hard but my message is also that I haven’t lost my mum - she’s changed in what she can do but she is still very much there ….in fact I have seen good bits - she’s actually more fun and a little more relaxed as some of her shyness disappeared- it’s not complete doom and gloom.

I’ve kept a diary thread for the past year or so Our Bitter Sweet Magic moments - have a read!

Thank you so much I will be reading this tonight once kids are in bed but to hear you say that even in late stages you haven't lost your mum truly means the world to me and gives me hope for whatever is coming so thank you so very much for giving me hope back .