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anyone's parent who's suffering from dementia?

(18 Posts)
cutekids Tue 26-Jul-05 14:35:28

MY DAD IS SUFFERING FROM DEMENTIA WHICH MY MUM AND I HAVE BEEN TOLD CAN NEVER IMPROVE. APPARENTLY, AFTER TALKING TO MY MUM A COUPLE OF WEEKS AGO, HIS CONSULTANT REQUESTED THAT I - HIS DAUGHTER - GO WITH THEM TO THE NEXT CONSULTATION AS HE WOULD LIKE TO "SPEAK" TO ME. ALTHOUGH NOT NERVOUS AS SUCH, WAS WONDERING IF ANYONE ELSE HAD DONE ANYTHING LIKE THIS BEFORE AND IF THEY KNOW THE REASON WHY HE WOULD WISH TO SPEAK TO ME. I'VE ALWAYS HAD A BRILLIANT RELATIONSHIP WITH MY DAD AND MAYBE HE'S TOLD THE CONSULTANT THIS BUT I'M STILL WONDERING WHAT I CAN SAY THAT'S GOING TO BE DIFFERENT TO WHAT MY MUM HAS SAID.

purpleturtle Tue 26-Jul-05 14:42:08

Sorry, I don't have any direct experience, dropped in because my Grandma had Alzheimer's. Grandad cared for her by himself for some time, but gradually all 3 daughters were involved too.

Do you think that it might be so that the consultant can talk with you about support your Mum might need too?

He may be looking for you to say stuff which backs up what your mum has said, rather than be any different.

Smurfgirl Tue 26-Jul-05 14:42:57

He may wish to involve you in your father's care. I work with people who have dementia and a lot of the time their care is decided by everyone in their family. The consultant may also want a different POV.

cutekids Tue 26-Jul-05 14:49:42

Yes,I had wondered if it was anything to do with support for my Mum. However, as a lot of women are, even though i've offered to "take Dad out" or asked him to come to my house "to take the kids down the beach" etc.,my Mum thinks i'm trying to be clever I think. Once, when I tried to stick up for him after he'd flooded the kitchen,she started shouting and crying and telling me "well you try living with him if you think you can manage" and words to that effect. I know I'm not married to him and fully appreciate how frightened she probably is for him deep down but I also have to concentrate on my own family aswell. I hope that doesn't sound completely selfish but I have three kids of my own who really are my utmost priority as much as I love my Dad and Mum. Do you know what I mean?

ruty Tue 26-Jul-05 14:53:18

yes i know what you mean. My mum has had vascular dementia for over ten years now and finally went into care last year. Its very difficult- i tried to help my dad do as much as i could, but when i got pregnant last year it got more and more difficult to help. You have to live your own life and look after your own family. let your mum know you are there if she needs you, but make sure you don't get swamped by guilt. It will be interesting to know what the consultant says. Best wishes

cutekids Tue 26-Jul-05 14:59:14

THANKS RUTY.IT'S GOOD TO HEAR FROM SOMEONE WHO'S BEEN IN MY POSITION AND KNOWS WHERE I'M COMING FROM. I'VE TRIED TO TAKE A STEP BACK REALLY SO AS NOT TO CAUSE MORE TROUBLE FOR MY DAD-MUM'S A BIT OF A SHOUTER IF YOU KNOW WHAT I MEAN-SO I'M JUST WONDERING HOW HONEST I'M GOING TO BE ABLE TO BE WITH THE CONSULTANT WHILST MY MUM'S SITTING THERE LISTENING TO EVERY WORD I SAY!

Smurfgirl Tue 26-Jul-05 15:17:46

Its important to be as honest as you can because its so hard to look after people when families are not as truthful as they could be. We get a lot of people with dementia coming into where I work who claim their parent is not aggressive etc when they are. The aggressiveness is not even an issue, its more finding the right care/meds for them and this can only be done when the healthcare team has an accurate picture of what that person is really like.

ruty Tue 26-Jul-05 16:04:29

luckily my mum was never agressive but went thru a paranoid period, but she came thru that and is now very calm and sweet. cutekids, just tell the consultant honestly what you feel. Maybe your mum needs some extra help with your dad - we were given a care assistant who came in first thing in the morning and would have come in at night too if my dad had wanted. We had that in the last few years before mum went into care, just to take the strain off my dad. its very hard i know, but try to get all the help you can from the consultant and the social services.

happymerryberries Tue 26-Jul-05 16:10:40

My mother also has vascular dementia and also went through a phase of paranoia. 'Thankfully' her disease has progressed and she has lost the ability to be so upset.....a ghastly thing to say but I'm sure you understand what I mean.

My mother had a very short period with carers in the house but has been in a psychogeriatric hospital or the last 4 years.

The consultant may well want you to help your mum make decisions about your fathers care. he may also ask about setting up an enduring power of atourny (sp?). he may also want you to be there to help your mother take it all in....it can be hard to take this sort of thing on board.

Sorry to hear your news and hope that the meeting goes well

mum2c Wed 27-Jul-05 09:32:25

May I butt in on this thread for your opinion. I'm very worried that my mother is developing dementia. Her memory is definitely failing and I mostly see it in relation to her constantly repeating herself, being unable to find the correct word to express herself, denying that conversations have ever taken place or that we've agreed that I will go to see her. This is far more than the normal forgetfullness. She's seen her GP who told her that it was just old age but I understand that current research indicates that we should not expect people to become forgetful as they get older. The other thing is that she becomes quite angry when I contradict her eg when I say that actually I did give her something or arrange to meet her etc. Otherwise she seems to cope quite well with her day eg getting up, making cups of tea, preparing food, shopping (albeit with a list but she's always done that). Understandably my father seems to be in denial about what is happening and always chooses to believe what she is saying and says that I'm mistaken or was not sufficiently clear when I spoke to my mother. Am I overreacting?

ruty Wed 27-Jul-05 23:23:56

mum2C i don't want to make you feel anxious but the way you describe your mother sounds very much like the early stages of my mother's illness. It makes me very angry that gps say its just old age and ignore it, because this is what happened to my mother, and by the time they gave her medication years later, the condition had progressed rather severely. It is important that if it is the early stages of dementia that it is treated as early as possible to prevent it getting worse, or to slow it down. My family were also in denial of the problem for a long time, no one wants to think this is happening to their mum or wife, but this does not help the problem. It may just be stress and she may not have dementia, but i would recommend that you make sure the gp takes you or your dad and mum seriously and refers you to a gerontologist. Let him know that you know treatment should be started early so that he doesn't fob you off. its hard to explain to your dad i know, but maybe you should have a chat to him. Best of luck.

serah Wed 27-Jul-05 23:41:24

Cutekids, my dad has multiple infarct dementia. He was treated for cancer a year or so ago and I gave up work for 6 weeks so I could take him for his radiotherapy. Often the doctors/nurses would talk to me as opposed to my mum - I felt that it was that they wanted a perspective of the dementia, i.e. the view of someone that didn't live with the dementia day in day out (i.e. my mum)and the effect the treatments and operations would and were having on him. Well, thats what they always seemed to be asking anyway. They also told me stuff they didn't tell my mum. I know thats a bit but I know why they did it.


Mum2c, can't agree with Ruty more - sounds a bit like my dad in the early stages of his dementia. Best of luck.

mum2c Thu 28-Jul-05 09:34:53

Cutekids, I just wanted to say (as a nurse) it's often helpful to have a son or daughter present for a consultation so that they are aware of exactly what is happening and can support the husband or wife of the patient. They also tend to be a bit more objective and assertive and will ask lots of questions that are relevant to their family. They can also reinforce what has been discussed at the consultation when the family get home.

Re my mother, having seen the GP and been reassured she's now delighted and is convinced that there is nothing wrong because Dr X told her so. Although I've raised it with her since then she and my Dad are not willing to even consider a second opinion or referral to a Gerontologist/Psychiatrist. I suppose that is because it would mean facing up to the fact that perhaps all is not well after all.

ruty Thu 28-Jul-05 10:15:24

it really annoys me mum2C that gps are either so ignorant of the problem or just don't want the bother of treating something they may feel is inevitable and don't want to spend money on. Dementia can be delayed or even improved by early treatment, but the gps who are the entry level for any assessment, so often brush it off until its too late. As you are a nurse, maybe you could have a word with the GP? Or another one? Maybe its an inevitable stage you have to go thru, your parents' denial. I mean, your mum, may be fine, but time will tell.If you see it getting worse, you must get help.

jamese Thu 28-Jul-05 11:01:59

My Dad died 3 years ago after suffering from Dementia for approx 5 years. His was apparently quite a quick regressive type. My mum as carer got loads of support herself, as they believe that is they help the carer she will be more help to the dementia patient. It is hard, especially at the start. My dad didn't handle it at all well, just didn't want to know what would evidentually happen to him. So my mum wasn't that prepared. He went through the agressive stage, then paranoi (kept saying he wanted to go home when he already was etc). His care got easier as he got worse, for about 2 years was the sweetest man I ever knew (got to love him in a completely diferent way from when he was my dad). I now he still was my dad, but so such different personality etc. I helped my mum as much as I could, and she did get a lot of help from the system (she was determind that he wouldn't go into a home). I have to say that I had closer bond with my dad then ever before. He couldn't do anything for himself evidentually, but he didn't know about it (as far as I am concerned) so there wasn't the embarrassment factor when I showered him or wiped his bum etc) glad I helped as I feel better about things now he has gone. My mum stills feels guilty that she could have done more. but she would have anyway (she couldn;t have done more btw). Hope things work out for you, don't be too hard on your mum, as she is right, you don't have to live with him 24-7, and it is a good way of her destressing.

ruty Thu 28-Jul-05 12:59:15

yep we did all that, the personal care, everything you can imagine having to do we did. When none of us could lift my mum anymore we had to decide on care after 10 years of looking after her. It may sound brutal but i think the swifter the disease progresses the better it is sometimes, I don't know how many years my mum has left bit it progressed very slowly over a long time. At least she doesn't seem unhappy, thank god.

cutekids Thu 28-Jul-05 23:27:04

Just wrote an "essay" on today's meeting. Typically, I was cut off in my prime and have lost all my info. Anyway, cutting a long story short, Mum and I have been told that Dad has got Vascular Dementia and that nothing's going to make him any better. Mum-always having been so proud of Dad's position in life-is actually in denial. I realized this today when consultant tried to offer all sorts of help and support. Mum kept saying things like;"we're not that far down the line yet"etc. Consultant kept responding with things like;"No, but in the future if....etc.etc."

ruty Fri 29-Jul-05 09:51:30

unless i'm mistaken there are drugs that can help/ My mum is on memantine [sp] which she is on far too late but it does seem to have helped make her more alert. Surprised the consultant didn't offer any meds. Your mum being in denial is difficult. You have to support her thru it but don't let yourself get too ground down. Best of luck with it.

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