Hello everyone, new to the forum but looking for some support/ answers!
Mum ,now 77, had a massive Brain Haemorrhage with associated stroke two years ago. At first not expected to survive but after surgery and three months intensive care made an amazing recovery! Her speech was pretty clear, she had physiotherapy and was walking fairly well and was able to return home independently. However recently we have noticed this has deteriorated , speech is becoming more slurred and she now walks with a very pronounced limp....although she denies any problem. I I also recently discovered she has some urinary incontinence and when I asked if she had been aware of passing water she said 'no just got up and it's wet'...I have got a doctor's appointment to discuss this!
Firstly I wonder can the symptoms initially improve but overtime then damage more pronounced?
The big thing we noticed was the change in her cognitive function. Although she is deemed as having capacity under MCA she often lacks insight into the consequence of her choices something readily acknowledged by her Neurosurgeon and the staff at the local day hospital she attends. It's a problem because mum appears so plausible and it's only when you with her 24/7 you realise the extent of the loss of function in this area. This has effected things like her social skills, spacial awareness and the way she spends money like it's going out of fashion and offering to help out on anything or everything , eg when on a bus trip to find folks who had got lost (which is hilarious because she gets lost herself in unfamiliar places) . She also spends more time napping all day then sits up until gone midnight!
This has lead to some really difficult discussions/ arguments between mum ,myself and my sister.For example she has become fixated on the idea that she must take a holidays abroad because everyone goes on a them! Fair enough and I have taken her to France and on an ocean cruise ( and it was VERY hardwork !!) and this year she booked herself a river cruise with a friend who was happy to accompany her.But the constant thought process is she a must book the next holiday and that's it's high time she went abroad alone yet cannot understand why this is problematical as she is 'no more likely to have problems than anyone else'. Our family are keen for her to maintain as much independence as possible but it's so hard at times because my sister and I are then accused of treating her like a child when we try to point out the certain safety measures, even simple things like checking neither of us are away because IF she did have a problem then who would be contacted?? When we ask this she says if she fell over someone would pick her up and is she had an issue she can speak.for herself!! I did ask if she could do that In an other language but that is dismissed by what we call the mum shrug and her stat phrase 'ok, I get it' ....when she obviously doesn't!
Sorry if this is going on but as mum has capacity it's a big worry because , like last year, she has just gone off a booked herself a holiday . At her last neurosurgical appointment the doctor referred her for neuropsychological support, I know I have a copy of the letter which states she has significant cognitive impairment, and I know sister from day hospital also referred but it's almost a year and we have heard nothing. I am begining to wonder if this is mum too. She has on more than one occasion said to me she is going to speak to doctor because she doesn't think she needs that referral now because we are getting on better ( in mums mind that's the issue ) and I wonder if she has told her GP that the appointment is not needed.
Love mum dearly but it's getting really tough to know what to do and her sister has recently been diagnosed with early dementia and mum is on about having her down to stay so she can look after her!!!! (Which basically means me looking after them both and I feel awful because I have had to say not on your life I just cannot do it).
Any advice and support be appreciated but just being able to vent on here helps believe me .
Hi and welcome. Firstly, has your mum been tested for a urinary infection. These can adversely affect behaviour.
Her behaviour is, I am afraid, typical of someone with a brain injury. I think most of us looking after someone with this type of problem find the same difficulties. I have had to give up on holidays abroad as the stress of looking after my husband in a strange place is too much to cope with (think of a man with a bi, getting lost in a busy airport when they have just finished boarding the plane). He can't see that he has anything wrong with him and keeps suggesting that we go away. Have you got power of attorney over her financial affairs? It is a horrid thing to have to do but maybe you could arrange her an account with a minimal amount available to spend so that if she tried to book something expensive, her cards would not work. This would give you time to sort it out with her.
Ask her doctor if she has cancelled neuro appointments - again a power of attorney over her health would give you the authority to do this.
horrid things to have to do, but as you know she has to be safe. Have you got a card from Headway that she can keep in her purse that says she has had a brain injury and needs special help from time to time.
I am afraid that you are having the same difficulties as many of us and there are no solutions, just ways of coping I am afraid and finding ways to minimise big problems.
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Thank you 'exhaustedwife'.
Just hearing I am not alone helps because I find myself questioning am I being mean and selfish etc over holidays.
My sister and I have joint POA over finances but not health, Mum made an advanced directive. I know this is an option and probs one we need to consider but I thought if she seemed as having capacity we cannot use the POA.
No I don't think mum has a card nor does she believes g to a headway group...she doesn't think it's necessary! I really hoped this referral might help and will chase up GP to ask about this, just hope I don't get the usual cannot discuss with you because not authorized!
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If your mother is getting worse, you need to make the POA over health whilst she is capable of signing the forms, otherwise it becomes much more complicated and expensive.
There is nothing to stop you going to her doctor by yourself and explaining how worried you are and telling him that you are concerned that she is cancelling appointments and doesn't understand how confused she is. Even if he won't discuss it with you, he can listen and then have an appointment with her to deal with the problems. (or you could write a letter). Even if she appears to have capacity, she obviously hasn't so you should get advice about this (contact the CAB).
As a survivor of encephalitis and now having a BI, I can give you perspective on some of the issues you are facing.
It is now 5+ years into my recovery, I am now 64, I still have incontinence issues, I had to re toilet train myself , mostly it came back but if I need to wee I have to go immediately because I cannot control it for long. In the rehab unit they used to leave a commode in my room, so they didn't have to look for one when I woke in the middle of the night, and I have to visit the toilet approx every 2 hours, or limit my liquid intake if I know there could be problems finding toilets.
The money problems I have managed to overcome, I likened it to allowing a 10 year old access to a bank account and credit cards, I ran up so much debt it will take the next 5 years for me to pay it off. My husband wouldn't take the account or bills over he made me relearn it all, I'm glad I was able too it may be that your mother will not, I was aware of the problems I was facing and could rectify them although it was very hard.
Great patience is needed dealing with people that have suffered BI they so want to be like the person they were to the point of denial at times.
I know I am not the same person but I have been able to fight to regain as much of the old me as I can, and am still striving. Our brains are able to rewire and relearn all our lives but that capacity does diminish with age. Ensure your mum continues to stimulate her brain daily. I have found jigsaw puzzles and paint by numbers invaluable aids.
Thanks for your reply ! It's great to hear from someone who has been through similar as mum.
The inconvenience issue is a new one unfortunately, mum always had that urgent need you describe and was managing well but lately she has not even been aware she is having accidents. I am concerned there maybe another cause for this so will be visiting GP.
You are So right about the money, in fact I have said exactly that, it's like giving a 10 year old credit cards! Unfortunately this is one area mum is resistant to any suggestions or help, and her statements that that's what money is for ( from someone who was always so careful and is now on a fixed income) are concerning. We have had to resort to snooping around checking her bank statements which makes me uncomfortable, although I know it's necessary. Unfortunately I cannot get the credit card cancelled but we have even hidden that at times!
I am so glad your husband was able to support you in this. Mum is a widow having lost dad just a year before her BI so was new to managing a budget before. As a family we continue to try and discuss these issues and advise, because I really don't want to have to use the POA unless it becomes absolutely necessary because I know this would devastate mum.
I don't think mum has got to the stage of accepting she is different than she was, that's part of the problem for us; In her head she is still the same so sees no need to make changes or even accept what others notice. She does keep busy with quizzes and suduko and crosswords etc, always loved doing them but they don't always make sense. She did have speech and language therapy at first but as with other support she dismissed it or discharged herself saying it wasn't needed.
I continue to try and support her best I can and it's inspiring to hear your story, being further down the road you seem to have rewired and relearned so it's great to know it's possible.
All the very best on your continued recovery, and thanks for sharing . X
Hi again,
You could get round the POA by telling her that you are doing one too in case anything happens to you and the children need help. Most financial advisors say everyone should have one in case of accidents, sudden illnesses etc. We have just got my mother to do one, my husband and I have one and so does my son. It is a sensible step to take.
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We HAVE financial POA, it's not used yet as mum is not judged to be lacking capacity. In area of finances I think k we have enough to challenge this now.
As for poa care, when we made poa her solicitor advised it wasn't needed as families would be consulted so she had advance directive which covered her concerns regarding recussitation etc.
Unfortunately because the solicitor said it's ok she won't budge on that !
I can so empathise with you I am going through a similar scenario. My son fell down stairs New Years Eve and badly fractured his skull badly. So much so that he wasn't expected to live. Thankfully he made a good recovery but of course it's now the brain injury.
He fixates on things so at the moment it's a certain mobile phone although he has the model before. As a mum I want to get him what he wants as I thought it might help alleviate the issue.
After reading your post I can see it might not. My son of course doesn't think there is anything wrong with him as he can't see any issue. It's very difficult indeed. He us still in hospital at present but will be discharged at some point. Scary
I will be thinking of you. I think POA for Health issues is a good idea sooner rather than later. x
Sorry to hear of your son's accident, I can only sympathise with your situation.
Certainly mum has made some improvements from her initial BI when she spent 3 months in ITU, so don't think it's all difficult...far from it!
I would advise ensuring you get a POA, you may not need to use it, and indeed cannot unless he is deemed as lacking capacity, but it's much easier to have it in place than to find you need it and don't have one.
I wish I could advise on dealing with the denial of any problems but it appears this is a common Long-term issue. We have learnt that if it doesn't really matter it's better just to let it go, after all her Neurosurgeon advised that trying to have an argument or get someone with a BI to see a different view is a bit like arguing with a wall. It's not the person it's the Injury However getting the support through neuropsychology important in Helping both the sufferer and families develop coping mechanisms to deal with these issues. In the begining I was too ready to say yes ok to keep her happy ( because frankly so relieved she wasn't a dead!) but now I have spent time living with her it's easy to see it's needed to ensure she keeps her independence.
After all our loved ones ability to be as independent as possible is the most important thing for me, and comes second only to keeping them safe! I have found wording things to point out the good for her can work well....but when she digs her heels in its game over.
Apart from all the other tips here, can the GP test your mum for vitamin B12 deficiency and do blood tests, etc? Just to make sure there is nothing going on there.
For sure have a chat about the life and welfare power of attorney. If you don't have it and your mum gets worse, then you would have to apply to the court of protection to be given permission to become your mum's health and welfare attorney. Also appoint a reserve attorney and even as a last port of call a solicitor just in case the relatives have accidents or something. It can take 6 weeks to lodge these forms.
Re holidays, can you get your mum to go to a local club or day center where there might be some nice organised trips away or in the UK? eg days out. It might give her the option to go on holiday in a safer environment.
Lastly, try to change your mum's diet? Try to keep her off too much sugar. See the book Tina M Sullivan, Nourish Your Noggin. My mum can say daft things when she has managed to eat 5 biscuits in one go. Yes she will do that!
I hope things improve soon. Parents can be very stubborn.
I will bear in mind asking g for blood test thank you.
Do have a reserve POA but like I said previous because solicitor told her he doesn't think health poa not necessary she won't budge on that so it would have to be a court of protection issue if it was ever needed.
I hear you over the clubs and trying to get her to go on day trips or hols in UK ....we have been suggesting this literally since the beginning!!!
She does one day at the day hospital and a lunch club once a month but other than that doesn't fancy other clubs like derby and Joan etc because , and I quote , ' it's just old people!' . As she is 77 I find this hilarious but then it also speaks to how she sees herself. It's ironic that one of her complaints is she feels lonely yet we can't get her to try and join anything. I do wonder if some of that is again down to us. I have always tried to take her out on my days off, but it became what she expected every week so I had to stop doing this regularly.
As for the diet, you are SO right,she eats proper meals, I cook them, but all she does is graze all day and it's always biscuits, cake, chocolate but when you challenge her on this she becomes very defensive and angry and says she is allowed treats. The fact she has gained over a stone and gone up a dress size seems to pass her by as she cannot link her poor eating habits and weight gain. It's something g else I need to speak to doctor about because she at risk of type 2 diabetes I am sure.
Yep, stubborn isn't in it....I really hate having to put my foot down at times but know it's about trying to keep mum safe.
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