My wife has had CA for about 28 years. She initially thought it was MS, but a thorough diagnosis when she had to have anesthetic for a Cesarian (breech birth) showed it to be CA.
She is now 48, and appears to be losing her mental faculties. I must say she has been a bit vague and difficult to have a conversation with for about 5 years, but in the last year has become very much worse.
She appears to have a large number of very irrational anxiety attacks, often about very trivial things that are not easy for us to understand. Unfortunately, as these were often blamed on me, and this was disrupting my sleep quite badly, we no longer sleep together.
The upshot of this appears to be that she thinks I am trying to get rid of her, and even that I am abusing her. I am worried that my recent attempts to get her medical help will also be seen by her to be a part of this.
Does anyone else here have any experience of possible dementia caused by CA, and how anxiety can be alleviated? I am really at my wits end here, and it is very destructive to our family. I married her 24 years ago, knowing she had a condition, but I am now no longer able to cope with it, sadly.
So you meant the upshot? I understand that this can be tough for both of you, but honestly she probably needs someone who makes her feel better. She can tell she is a burden to you, and though we can never prepare for such times, she does deserve to be loved and cared for. And if that person will not be you, regardless of what people will say about you (and many will not be good) it is your duty if you KNOW you cannot fulfill your commitment to your marriage at least get intouch with her family and be as honest with them as you are here.
I was told this is a judgement free zone and I agree, but the LOVE and CARE someone needs will always outweigh the ego's need to be right. You are at a very important part of both of your lives. As difficult as it might be, you owe it to her to at least start a plan to have her being taken care of someone who doesn't feel burdened.
Good Luck I know this aint easy, Her, you and everyone deserve love and compassion especia;;y at times like this.
Unfortunately her family is not going to me any help, and never really have been, although I will try. She has a brother she is not close to, and a mother who is over 80. They know there are issues, but are not aware of the depth of the problem as of late. I am waiting on medical advice before telling them the depth of the problem.
Unfortunately, she no longer even understands that she is a burden. Of late she thinks she can ‘get rid of’ me (I assume that means divorce), and look after herself. Anyone can plainly see that this is nonsense, but she firmly believes it, even to the point where she thinks she can get a job (she can’t even talk properly now).
Upshot is really what I meant, as she will no longer let me help. I agree she deserves all possible care, but I just can’t provide it, mainly because she truly believes I am ‘against’ her As such, anything I try to do is seen as a threat to her. I am having difficulty getting doctors involved because of the level of paranoia. The doctor can plainly see there is a massive problem, but she refuses to listen to him. I am hoping a specialist can do more, but I think it will take time finding the right one as there is little knowledge of such conditions.
It is also very disturbing to our 12 year-old daughter, and our 18 yo son left home before school ended because of her behaviour toward him.
I feel so sad right now and feel your pain somehow. What are the options? Maybe the Family is relying on you? That phrase blood is thicker than water is somewhat true, but not always. Maybe here, they may surprise you.
Don't answer here, but does her family truly understand your relationship with their daughter? Have they always counted on you? I say a "come to jesus talk" is need with the in-laws. You have nothing to lose.
The thing I learned about honesty is that it never needs defending and it's the greatest feeling of letting go.
I appreciate your obviously thought felt response, others might have been defensive. I am horrible at sports but I am on your team. :)
Zig Zag Wanderer said:
Unfortunately her family is not going to me any help, and never really have been, although I will try. She has a brother she is not close to, and a mother who is over 80. They know there are issues, but are not aware of the depth of the problem as of late. I am waiting on medical advice before telling them the depth of the problem.
Unfortunately, she no longer even understands that she is a burden. Of late she thinks she can 'get rid of' me (I assume that means divorce), and look after herself. Anyone can plainly see that this is nonsense, but she firmly believes it, even to the point where she thinks she can get a job (she can't even talk properly now).
Upshot is really what I meant, as she will no longer let me help. I agree she deserves all possible care, but I just can't provide it, mainly because she truly believes I am 'against' her As such, anything I try to do is seen as a threat to her. I am having difficulty getting doctors involved because of the level of paranoia. The doctor can plainly see there is a massive problem, but she refuses to listen to him. I am hoping a specialist can do more, but I think it will take time finding the right one as there is little knowledge of such conditions.
It is also very disturbing to our 12 year-old daughter, and our 18 yo son left home before school ended because of her behaviour toward him.
I am in a similar situation, although my husband is older. I know how you feel, trapped. I am now on anti-depressants for panic attacks and depression. Try to get some respite if you can. Go to GP social services, psychiatrist anyone who is willing to push your case for help and support.
Dementia is not a result of CA but as others have indicated, CA can lead to depression and anxiety.. may be even paranoia.
You sound a very sensitive person and I am pleased that you have come to this forum for support and advice - it's a very difficult situation that you are faced with and I hope that you will find support from your doctor.
I can see that your wife's family are not able to help and your responsibility to your children is high priority.
What a horribly difficult position you are in! I have Fragile X Tremor/Ataxia Syndrome, with some dementia also. The suggestion above to reach out to a specialist is a good one. A neurologist with movement disorder experience would be best, I think. Maybe you could make an app’t for a consultation with just you first? I don’t know how it works in the UK, but I was able to get in touch with the neuro dep’t of the Oregon Health Sciences University here in Oregon(USA), and they were immensely helpful to me. If you could talk to someone knowledgeable on the telephone, they could advise you on how to proceed. I was started on Memantine, an Alzheimer’s medication, and it has really helped me. It sounds as though your wife needs a different level of care than you can provide, which is not your failing! I sincerely hope that you can find help soon, we will all be rooting for both of you! Try to take care of yourself as well during these difficult days, ok?
Lorinn
very good comment Peter. I have Spino Cerebellar (15 yrs.) and thank goodness have a very supportive husband and family. Have good mental so far.
Peter Franks said:
So you meant the upshot? I understand that this can be tough for both of you, but honestly she probably needs someone who makes her feel better. She can tell she is a burden to you, and though we can never prepare for such times, she does deserve to be loved and cared for. And if that person will not be you, regardless of what people will say about you (and many will not be good) it is your duty if you KNOW you cannot fulfill your commitment to your marriage at least get intouch with her family and be as honest with them as you are here.
I was told this is a judgement free zone and I agree, but the LOVE and CARE someone needs will always outweigh the ego's need to be right. You are at a very important part of both of your lives. As difficult as it might be, you owe it to her to at least start a plan to have her being taken care of someone who doesn't feel burdened.
Good Luck I know this aint easy, Her, you and everyone deserve love and compassion especia;;y at times like this.
Thank you all for your kind comments. I will certainly push the medical help (they are not very responsive so I have to chase them up). Talking to them in advance is a good idea, but I actually have to be careful not to trigger any paranoia there. I am actually no stranger to paranoia, having dabbled in recreational substances as a youth, so I almost know what is going on there.
Fortunately I have very good friends, so they are giving us the support we need right now. I am also fairly resilient myself, but I can only deal with it objectively at this point. If I get too involved I can’t manage, hence the medical help.
It is good to hear that these anxiety attacks can be managed and possibly alleviated. I think if we could do that, the rest would be almost easy (as easy as anything in these conditions, anyway). I am definitely considering respite care if we can arrange it.
My next area of interest may be stroke therapy. I have known a few people with strokes, some massive, including paralysis & loss of speech. In several cases I have seen very significant recovery with proper therapy. I would like to see if that will help - I’ll start another post on the subject when I’ve looked into it.