I think my sister has Alzheimers or another type of dementia

[Chrissiejb]

I am in a dilemma as to how best to deal with the situation. I live in France and she is in the UK. Her husband has refused to listen to his children's concerns and as far as we know nothing is being done to diagnose whether she has dementia of some sort or something more simple that could be treated. She suffers with depression, short term memory loss and confusion, and one or two examples of inappropriate behaviour. I am worried that if I write to her her husband will be furious and aggressive which he has been towards his children when they expressed concern over her condition. She suffered badly with polymyalgia rheumatica for three years - treated with steroids - and then had to have a hip replacement one year ago. She is timid, takes no joy in life and is completely changed from the intelligent, dynamic person she was. She is my twin, we are both about to be 70, I don't want to cause a family eruption and distance her and her husband even more from the rest of the family. Any suggestions?
Thanks.

 

[Cat27]

Welcome to TP

Tricky!
Are you due to visit her anytime soon? Face to face you'd get a clearer picture of what's going on.

 

[Chrissiejb]

Welcome to TP

Tricky!
Are you due to visit her anytime soon? Face to face you'd get a clearer picture of what's going on.

No, can't get over there till January. I saw her a couple of weeks ago but at a family wedding, so no face to face time. I know there is a problem, her best friend went to visit a couple of weeks ago and was also very concerned. My only option seems to be to write to her mentioning that it is with her childrens' approval and repeating their concerns, but it might backfire disastrously as her husband is in charge. Maybe best to do nothing but feel I am letting her and her children down.

 

[Cat27]

Do her children still see her? Do they see her alone or is dad always there?

 

[grove]

Hello & Welcome....

Too. T P Chrissie am.sorry too read about your dear Sister how awful for you especially as you live in France Sorry no advice & sending lots of Love , Support and. Positive Vibes Hope another member comes along soon too offer you advice.


Thinking of you both.

Where in. France do you live. ? My brother lives in. St Gervais.

Love. & Hugs.

Grove. X X.

 

[Chrissiejb]

Do her children still see her? Do they see her alone or is dad always there?

Her daughter is in the US, my sister and husband have just returned from a very short visit during which her daughter did not want to mention her worries because the last visit ended badly over the same thing. Her son is in London, he sees her from time to time but I am not sure about alone. There is a rift caused by the father seeing intervention from his childen as interference and that is where the aggressive reaction comes in, when he is confronted. I have a sister and brother in the UK who are aware of the situation but they are not so close to my twin sister, they could possibly be persuaded to go and see her in person. Might that be better than putting words on paper that could be misinterpreted?

 

[Cat27]

Face to face you see nuances & expressions that the written words doesn't always convey.

 

[Chrissiejb]

Too. T P Chrissie am.sorry too read about your dear Sister how awful for you especially as you live in France Sorry no advice & sending lots of Love , Support and. Positive Vibes Hope another member comes along soon too offer you advice.


Thinking of you both.

Where in. France do you live. ? My brother lives in. St Gervais.

Love. & Hugs.

Grove. X X.

You are very kind! I live in Brittany and in the winter it is so difficult to get to the UK, flights stop and ferries become infrequent. But thanks for the support.
Chrissie

 

[Chrissiejb]

Face to face you see nuances & expressions that the written words doesn't always convey.

Will wait to see response from my niece and nephew to a suggested letter and tell them I am in a dilemma although I want to help. Might well speak to my brother and other sister over the weekend and see if they can think of a solution to approaching the problem without causing fatal rift.
Thanks for input and advice.

 

[nicoise]

I would definitely avoid the written word - it loses that personal touch, and so much can be misinterpreted - given this already seems a very touchy subject, it could really do more harm than good for family relationships.

And whilst I totally understand your concerns, I'm afraid I also do think this still is a personal matter. Unless she is in danger of coming to or causing harm or is being neglected, I'm not sure what good potentially causing enormous family upset is going to achieve.

I take your point about perhaps being able to get treatment for either something medical, or dementia. But whilst early treatment for dementia can possibly help slow down the advancement of certain types of dementia, not receiving it will probably not speed up the process, nor miss out on it reversing or halting progress altogether.

This may have to be a slow and sensitively handled campaign just to get her to be seen by her GP in case there is something that could be treated.

 

[Chrissiejb]

I would definitely avoid the written word - it loses that personal touch, and so much can be misinterpreted - given this already seems a very touchy subject, it could really do more harm than good for family relationships.

And whilst I totally understand your concerns, I'm afraid I also do think this still is a personal matter. Unless she is in danger of coming to or causing harm or is being neglected, I'm not sure what good potentially causing enormous family upset is going to achieve.

I take your point about perhaps being able to get treatment for either something medical, or dementia. But whilst early treatment for dementia can possibly help slow down the advancement of certain types of dementia, not receiving it will probably not speed up the process, nor miss out on it reversing or halting progress altogether.

This may have to be a slow and sensitively handled campaign just to get her to be seen by her GP in case there is something that could be treated.

The more I think about it, the more I think you are right. But I will still feel I am letting her down if it is something simple such as a vitamin deficiency which can lead to confusion, etc. but I don't want to make her even more isolated from all of us, which might well happen. So I will rethink it all over the weekend. Thanks for your help, obviously I am having doubts about interfering or I wouldn't be so worried about contacting her.

 

[grove]

You are very welcome. Chrissie for my support. & it bumps your Thread up***** Sorry about the Transport problems. My brother has.it the other way round in the. Summer he flies into Genva. & not many local links. Home as it is not the Ski season Think he uses the. Ferries


Hope you have a good day & .find T P helpful and friendly.


Love ..Grove. .X X..

 

[Mrsbusy]

Just an idea and it may not be any good but could you Skype your sister? This way you can maybe get a better picture of her well being over a period of time, and her children could do this too for peace of mind. Depends on husband too of course but maybe think of a pretence of 'none of use are getting any younger so thought I'd Skype each week to stay in touch' type of reason.

The husband is obviously in denial and worried about any diagnosis so would rather pretend it's not happening by the sound of it. Not easy but eventually he will have no choice but to accept and acknowledge it. Has the problem got worse since her operation as anaesethic is known to make it worse ? My mums started then after her hysterectomy.

Good luck and keep us posted.

 

[nicoise]

Dear Chrissiejb,

Perhaps taking some time out to think it over will help you find a good way of dealing with this problem.

Another idea which some have found useful is a letter directly to a person's GP. In this you could say what odd behaviours you have noticed, and what changes have occurred. The GP will not be able to respond to you, but it could be useful background. You say that your sister has other health problems, so probably visits her GP fairly regularly. If the GP is so inclined, they may investigate the changes outlined in the letter.

I appreciate that goes in the face of my "don't interfere" suggestion; but that way you might be able to put your worries at rest by informing someone who can actually make a difference - the GP - without stirring up family trouble.

If you do follow that path, perhaps keep it to yourself, and cross fingers that it achieves something. Equally, whilst the GP will not enter into any dialogue with you about your sister, it may well be prudent in the letter to ask for confidentiality in your raising these matters with the GP.

It is very worrying when so many people have noticed changes, but it seems impossible to make those you are concerned about listen. But sometimes that choice just is up to them, even if it seems their denial is foolish.

But now you've found TP, it will be a fountain of information for you (and the wider family), and support for you too. Best wishes.

 

[Raggedrobin]

Hi there
What a difficult situation for you. So, first off, I would avoid writing. It probably will cause problems. Secondly, you need to remember that quite a large number of people with dementia appear in denial that they have it. That isn't what is actually going on, their brains are preventing them from thinking logically, but your sister herself may take it as an affront, along with her hubby.

I would do two things. I would write to her GP, explaining all the circumstances, explaining that you are her twin etc. GPs are good at finding ways to broach memory issues without saying anything detrimental, he or she can find a ruse to invite your sister for a check up or something - you can suggest that to the GP in the letter. I would follow it up with a phone call to the GP after they have had time to read the letter to see what action they will be considering.

If you want fast action I think you have to come over, and then you can both talk to your sister and perhaps take her to the GP or if she doesn't want to go, make an appointment to see the GP yourself (as a temporary visitor) and then explain it. While a GP may not be able to discuss your sister with you, in terms of privacy, you can discuss your sister with him.

I think it is vital that you do get help for your sister because a) her problems could be caused by a different undiagnosed health condition which needs attention and b) the sooner she knows the sooner she can get onto a drug like Aricept, if she does have dementia, which helps slow the progress of the disease in its early stages. So my idea would be find out who her GP is, write to him, come over, visit your sister and get her to see him too. As to the husband, if he is unhelpful on this issue, then I would suggest not involving him in any way until she has a clear diagnosis.

If you are wrong and she has some other condition apart from dementia, the GP will not disclose that you have written to him/her if you ask them not to, and they can be the independent arbiter of what her symptoms mean, just make sure you clearly list all the things that seem 'wrong' to you. Having had to go behind my mother's back to do all this myself, I am glad in the end that I did, even though I was very aware that it could be seen as interfering, if it turns out to be dementia, I am afraid it is a necessary intervention. If it isn't, you may still be helping your sister's health via the back door of alerting the GP.

It may mean you have to make a trip over before January and of course travelling in the winter is no fun but if you are just going to be over there worrying about it I would have thought it would be better to take action now rather than wait. Good luck whatever you choose to do and I do hope you let us know the outcome.

 

[Chrissiejb]

Dear Chrissiejb,

Perhaps taking some time out to think it over will help you find a good way of dealing with this problem.

Another idea which some have found useful is a letter directly to a person's GP. In this you could say what odd behaviours you have noticed, and what changes have occurred. The GP will not be able to respond to you, but it could be useful background. You say that your sister has other health problems, so probably visits her GP fairly regularly. If the GP is so inclined, they may investigate the changes outlined in the letter.

I appreciate that goes in the face of my "don't interfere" suggestion; but that way you might be able to put your worries at rest by informing someone who can actually make a difference - the GP - without stirring up family trouble.

If you do follow that path, perhaps keep it to yourself, and cross fingers that it achieves something. Equally, whilst the GP will not enter into any dialogue with you about your sister, it may well be prudent in the letter to ask for confidentiality in your raising these matters with the GP.

It is very worrying when so many people have noticed changes, but it seems impossible to make those you are concerned about listen. But sometimes that choice just is up to them, even if it seems their denial is foolish.

But now you've found TP, it will be a fountain of information for you (and the wider family), and support for you too. Best wishes.

Thanks so much for your message. I have read that I can contact her GP on an Alzheimers website so am thinking that might be the best thing to do. I do understand that her husband may be protecting her from further medical stuff because she was badly affected by the PMR and the hip, but he is not easy to talk to about personal stuff being very private, so probably best not to involve him at all and find out who her GP is. Will update on whether this works.

 

[Chrissiejb]

Hi there
What a difficult situation for you. So, first off, I would avoid writing. It probably will cause problems. Secondly, you need to remember that quite a large number of people with dementia appear in denial that they have it. That isn't what is actually going on, their brains are preventing them from thinking logically, but your sister herself may take it as an affront, along with her hubby.

I would do two things. I would write to her GP, explaining all the circumstances, explaining that you are her twin etc. GPs are good at finding ways to broach memory issues without saying anything detrimental, he or she can find a ruse to invite your sister for a check up or something - you can suggest that to the GP in the letter. I would follow it up with a phone call to the GP after they have had time to read the letter to see what action they will be considering.

If you want fast action I think you have to come over, and then you can both talk to your sister and perhaps take her to the GP or if she doesn't want to go, make an appointment to see the GP yourself (as a temporary visitor) and then explain it. While a GP may not be able to discuss your sister with you, in terms of privacy, you can discuss your sister with him.

I think it is vital that you do get help for your sister because a) her problems could be caused by a different undiagnosed health condition which needs attention and b) the sooner she knows the sooner she can get onto a drug like Aricept, if she does have dementia, which helps slow the progress of the disease in its early stages. So my idea would be find out who her GP is, write to him, come over, visit your sister and get her to see him too. As to the husband, if he is unhelpful on this issue, then I would suggest not involving him in any way until she has a clear diagnosis.

If you are wrong and she has some other condition apart from dementia, the GP will not disclose that you have written to him/her if you ask them not to, and they can be the independent arbiter of what her symptoms mean, just make sure you clearly list all the things that seem 'wrong' to you. Having had to go behind my mother's back to do all this myself, I am glad in the end that I did, even though I was very aware that it could be seen as interfering, if it turns out to be dementia, I am afraid it is a necessary intervention. If it isn't, you may still be helping your sister's health via the back door of alerting the GP.

It may mean you have to make a trip over before January and of course travelling in the winter is no fun but if you are just going to be over there worrying about it I would have thought it would be better to take action now rather than wait. Good luck whatever you choose to do and I do hope you let us know the outcome.

Your words connect with my thinking. I am going to think it over again, and probably again, get in touch with her children and try to find out who her GP is with the intention of writing a letter along the lines you suggest. I did read one can do that but not get any info back, which would be fine. I will be over in January so maybe things will be moving by then.
I really appreciate an anonymous opinion from people who presumably are involved in a situation with the disease and have experience of the best way to deal with denial. I will update whether dealing with the problem in this way is effective.
thanks so much.

 

[Chrissiejb]

Just an idea and it may not be any good but could you Skype your sister? This way you can maybe get a better picture of her well being over a period of time, and her children could do this too for peace of mind. Depends on husband too of course but maybe think of a pretence of 'none of use are getting any younger so thought I'd Skype each week to stay in touch' type of reason.

The husband is obviously in denial and worried about any diagnosis so would rather pretend it's not happening by the sound of it. Not easy but eventually he will have no choice but to accept and acknowledge it. Has the problem got worse since her operation as anaesethic is known to make it worse ? My mums started then after her hysterectomy.

Good luck and keep us posted.

Thanks for your reply. I don't think they do Skype and would definitely think it odd if we started now! I think he is trying to protect her from further medical interventions, possibly sub consciously, or is just in denial, not easy to tell. The problems started during the PMR, some 4 years ago, rather than after the hip operation but have got worse since then. I think I will go down the route suggested on this forum of writing to her GP when I can find out who he/she is.
Thanks for your advice.

 

[Slugsta]

Hi Chrissie and welcome toTP.

What a horrible situation for you to be in, especially as it is your twin about whom you are worried

I concur with the advice you have already received, putting your concerns in writing to your sister sounds like a bad idea, whereas writing to her GP is a good one. It does seem likely that you will need to make a trip over here to see for yourself, I do hope this does not cause you too many difficulties.