• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Mystified...

jc141265

Registered User
Sep 16, 2005
836
45
Australia
I visited my doctor today for a very well overdue check up. She asked me about my medical history (she doesn't know me very well) and I pointed out that a lot of my past illnesses I believe were due to the high levels of stress I was under, what with Dad having dementia..and it getting progressively worse over the last few years...I was happy to report though that lately I am getting more of a handle on it all and was only there for a check-up today.

Anyway, she pauses after I say this and then says 'Hmm, you appear to be having some difficulties coping with your father's illness.' And she said it like I shouldn't be???

Me, who's been through the roughest of times the last few years, rolled my eyes a bit and said, 'Yeah well you kind of get that when your Dad is dying in front of you for years on end....'.

Is it just me or is this doctor out of touch with the reality of being in this position? I know she sees dementia patients because I have noticed her making visits at the home Dad lives at. Or is she right, is it bizarre that I haven't always coped brilliantly with the dementia thing? :confused:
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Nat, what on earth do you mean "havn't coped brilliantly with the disease".
I feel you have done extremely well. The doctor in question may deal with dementia all the time, BUT, is not a full time carer 24/7.

That is the essential difference. Surely you have noticed here on TP how we can see someone elses problems, offer good advice on occasions, and be very sympathetic. WHY - because we are not in that particular situation 24/7. In fact we are only observers.

Of course it is different for you with your dad. That's your own unique experience that you cannot walk away from. I can comment on your situation, because I am not dealing with it. Do I make sense?

Chin up, head high, and smile.. You know I'm right. Take care, Connie
 

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
Nat, you are so right, indeed "she doesn't know you very well"

My comment would be the obvious - that she's a stupid, insensitive cow with no imagination. Just another person to "shine on" and forget about.
 

jc141265

Registered User
Sep 16, 2005
836
45
Australia
Thanks

Connie, its only in the last year or so that I feel like I realy am beginning to cope so I guess you have only seen the stronger more positive side of me, but thanks for your words, they mean a lot to me.

Lynne, your words cracked me up, watch out you are starting to sound as blunt as me! ;) Exactly what I needed to hear and said in my own language too if you know what I mean. Probably exactly the advice I would have given someone else had they posted my words...its funny how sure you can be when looking at someone else's situation but when it comes to your own the little doubt monster always drops in. Which is pretty much what Connie said as well.

Thanks again both of you, doctors can be so infuriating sometimes!
 

Dawnb

Registered User
Mar 2, 2005
30
47
dublin
I think you should have replied to the doc that she seemed to be having some difficulty with her bedside manner !!
Why is it that at the time you most need someone to say," your doing a great job looking after you dad and it must be so hard to watch someone you love deteriote in front of your eyes," that they come out with choice statements like your doctor did !!
tell her to go and play with the traffic and see how she gets on !!
You are so dedicated to your dad and although I dont always reply to your posts it is perfectly obvious that your love for him, makes it all the harder to cope with the ups and downs. you know and everyone close to you knows that you couldnt be a better daughter than you are, so tell your doctor to put that in her pipe and smoke it !!
All the best
Dawn :)
 

jc141265

Registered User
Sep 16, 2005
836
45
Australia
Thanks Dawn and thanks also for the comment about my love for Dad making it harder...because I've wondered about that sometimes...wished at times I didn't love him so much, because then maybe all this would be much easier!
 

mandyp

Registered User
Oct 20, 2004
150
Glasgow
Hmmm, have to say that clearly this doctor is more than a tad lacking in tact and sensitivity and they call them the 'caring profession'. It would seem not in this case!

Having read your posts I empathasise a lot with what you feel and say and would frankly ignore this. When we love and care about someone is it not logical that we would feel pain seeing them in any unpleasant situation.

Ridiculous the Doctor is clearly a moron. I think it's totally acceptable to be upset/concerned etc. etc.....I'll stop now as it could be a long list! The nurse in my surgery asked me how I was doing and how I was coping with what was happening to Mum and also voiced concern at how Dad's health was being affected. She advised me to try to be strong for both of them (easier said than done sometimes, but I do try) She was very nice, as was the doctor when I saw him. I would say that you've had an unfortunate experience with her. It's not wrong to love:)
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Hi Nat, well tonight I am not coping...........why..........because I love too much.
I know I have placed Lionel where he can be cared for best...........I have phoned and he is in bed 9.45pm watching a detictive program (he will enjoy).

So why am I not coping, why have I shed buckets of tears, why am I a nervous wreak.........why have I drunk so much....because I love. (I restrained from saying too much) because as Lionel would say, quantify 'too much'.

We do what we can, we are what we are. You love your dad, and so it will never be easy......So don't be hard on yourself love, Connie
 

Amy

Registered User
Jan 4, 2006
3,453
Hiya Connie

You are coping though. Crying, being a nervous wreck, having a drink - they all sound like coping with grief to me. It is quite right that you feel sad tonight, you know that this could signify the end of one episode of your life with Lionel; a new phase in your lives together is beginning. The fact that you are able to come on here tonight - I take my hat off to you!
I think the fact that we cry, face the illness in those we love and keep loving and caring despite the pain it causes us, shows how well we are coping.
Amy
 

rummy

Registered User
Jul 15, 2005
700
Oklahoma,USA
Hi Nat,
I think AD is just coming out of the closet and the needs of care givers is just becoming a topic for doctors and the media. Also I think it is something you have to have in your family to have empathy for. I guess that is why we have to be so proactive in this disease.
I am stressed to the max right now. (It was a rough week) I would almost welcome a doctor to tell me that isn't natural so I could bite his head off! ( just the mood I'm in !)
Take care,
Debbie
 

jc141265

Registered User
Sep 16, 2005
836
45
Australia
Everyone's messages here have touched me and made me feel normal again in a world where most other people think my reactions to Dad is abnormal so thanks all for that.

I wish I could snap doctor's heads off Rummy, unfortunately once I release I go beserk I think and so then they look at me as if I really am a nutcase! :p Doctors here in Australia are very into diagnosing depression at the moment. I am sure many carers do unfortunately sink into this and perhaps I have too in the past, but I am comofrtable now that I am through the worst of it.So I said to this doctor when she started down that path of questioning, 'No I am not depressed, doctors have been suggesting that for the last few years, I don't have problems with motivation, I am just plain old sad.' I also politely told the doctor that I had seen a psychologist last year about the whole thing and have had great relief ever since she told me that my feelings were completely normal, each time I said, 'But, other people seem to think...' she would say to me 'Natalie your father is dying and in a horrible way, what you are feeling is normal'. Basically she told me something that you would think would be a horrible thing to be told...she told me that I will probably feel like this on and off but continually so until the day dad dies. But you know, to hear her say that, to give me 'permission' to feel like this, was an unbelievable relief! Its far easier dealing with grief when you don't have to worry all the time what other people will think...now I can just feel miserable sometimes and know that even if other people think I am not 'coping' that I have spoken to a professional and she says I am fine...just human....watching someone I love go through hell.
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Nat and Connie, Rummy has put it very well, we are only just getting this illness out of the closet. At last the powers that be are having to face us and listen to what it is like to care for a loved one with dementia. The easiest route it seems, is to tell us that we are depressed and not coping, excuse me?? How the heck do they expect us to be but sad about it all as you so rightly say! It's just the most awful illness to cope with and as others have said, often, the professionals dont understand. Those that have had to deal with it in their own families would not be as patronising I am sure. Lotsaluv, She. XX
 

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