Dealing with dementia - anyone else?

[daffsntulips]

I could do with somewhere to chit-chat with people going through similar; a kind of group blog.. .

My situation-

My MIL has some sort of unlabeled dementia and is not taking any medication. She lives alone in sheltered accomodation. She has carers twice a day and meals-on-wheels daily. She lives 2.5 hours away from us.

My mum has dementia but I don't know what type . She takes Aricept. She lives with my dad again 2.5 hours away from us but in the opposite direction to MIL.

What is your situation?

Ta

Yor poor dad PA, . I think this kind of thing shakes them up a lot more than physically as it makes them think "What if..."

You are lucky to have 4 siblings to share things with; are they all happy to take their share?

Thanks Daff,

Had a long conversation with dad today. He says he is fine. Thye have the consultant going in to see them on Thursday and I am trying to get my dad to think about what he needs to tell him.
Dad's of an age where he thinks all doctors are just a smidging down from God and never to be questioned. Say yes and no in the right places and dont make a fuss is his attitude!! Grrrrr!! After working with Drs for many years I dont have the same feelings and would like to sit and question and comment and make sure that mum is getting everything she needs. Dad doesnt want me there!! - because he knows that I wont keep quiet, I suspect!!

Anyway, Ive got a few days to work on him nd perhaps get some stuff written down that he must ask and tell him about.

Hope you are ok. Is MIL still settled ok?

Yes, keep trying PA.
I wish I lived close enough to attend my mum's appointments.

MIL seems to be very settled; she appears to have forgotten where she has lived for the last 7-8 years.

We are going on holiday tomorrow so I will be missing for the next 2 weeks but I hope things run smoothly for you all. Will catch up soon.

Hi all

PA - hope you can persuade your Dad to let you sit in with the consultant - I've certainly found it helps - I don't think my DM would have been given the eye injections if I hadn't been there to comment on previous laxity.

Daffs - have a great holiday. Pleased your MIL is settled.

My mother has her next eye injection this week and my father his colonoscopy next so I am keeping my fingers crossed that he hears good news afterwards.

Leonora hope your mum's injection goes ok. Is she ok having it done, or does that all confuse her? Thoughts for your dad too, who is probably a bit anxious about next week.

Daff missed you to wish you a good holiday, but I hope it goes well anyway .

Hi

Leonora how did the hospital go? Hope it went all smooth.

Daffs Hope you had a good time away.

For the first time ever this week, me 2 of my sisters (I have 3, but one lives too far away) and my brother met in a pub and sat and dicussed our parents. It was a really fruitful evening, mixture of heartbreaking truths and reassurance that we will all work together. We now ahve a long term as well as a short term plan, which is reassuring.

Long term plan is that we all take it in turns, a week at a time to live with my parents, when they get so bad as to need it. I ahd been concerned that we were the natural choice for them to come and live with us, but with 5 DCs myself, and 3 jobs it would be difficult. I am really happy with this plan, so is everyone else.

Short term, we will visit more often, speak to dad about a few things that are bothering us, try and get my dad to stop driving because he is an absolute liability and speak with a new "dementia care centre" in a nearby town. Also we are meeting again every month to keep communication up between us.

I am mighty relieved.

Sorry, posted a bit quick.

Hope you are doing ok and enjoying the end of the summer holidays!! (Where's the summer, though???)

Hi PA

So glad you had a chance to talk to your siblings and came up with a plan which sounds sensible and doable (sp?). Know what you mean about the driving but my Dad (at 89) is talking about buying a new car and he cannot bear being tied to the house so I only control the situation when I'm around by doing all the driving to "give him a break".

Mum is ok with the injections although she seems to be flinching more with each one - I really can't bear to think of undergoing this myself so I almost think her memory loss helps. They would seem to actually be improving her sight which is quite against the odds as I understand it; the aim was simply to arrest deterioration.

My father had his colonoscopy and a suspect polyp was removed for biopsy. Now awaiting results; he seems quite positive but he is a very stoical person. I have been trying to spruce up their house and weed out some junk while staying there but Mum is very resistant to parting with anything!

Daffsntulips - hope your holiday went well.

Hello. Hope you are all coping ok, and your parents are ok.
My mil began to just sit staring, or else sleeping too much, and the doctor changed her medication. I only know this as our son went to stay for a few days, to drive fil to have eye surgery and help out with a few things around the house for a few days. Ds told me grandma (mil) repeats questions every few minutes. I don't know what the new medication is, will be e-mailing fil to ask him. I just spoke with fil, and he didn't mention a thing about it, but I guess he is preoccupied with his senior driving test he had to do, and his eye surgery.

Leonora, I can't find the part about your mum's eye injections, what are they for? (shudders at the thought)

GTA

Sorry to hear about your mil's memory, the repeated questions sound just like my mother; it can be very wearing having the same conversation again and again. Hope your fil's surgery went well and he did ok with his test. We've been told there is no suitable medication for vascular dementia so im guessing your mil's condition is alzheimers; if not I'd be interested to know what she is taking. Mum's injections are for macular degeneration. They arrest further deterioration of her eyesight in one eye - the macular degeneration in other eye has already turned wet which means it's too late for treatment. NHS policy was to let one eye "go" before treating the other, not sure whether this is still the case.

Hi, and thanks for your reply. Yes, mil has Alzheimer, as far as we know anyways. Fil had cataracts, had one removed while son was there and having the other eye done this week and dh will go there this time. He was able to do his test (and passed) before the eye surgery, once he explained he was having his eyes done, so they squeezed him in earlier than scheduled.

Hope your mum's injections are successful, and glad she is taking it well. Hope your dad's polyp will not be serious. Dh had 4, about 4 years ago, but they were not cancer and he has been fine. Fingers crossed for your dad.

Hi

so sorry I have been missing for o long.

Our holiday was fantastic, but seems like a long time ago now.

My MIL continues to do well and sems very happy in the CH. She was concerned recently about how she was going to pay the bill for "this lovely hotel" so thought it best to go home in a few days. SIL reassured her that the bill was already paid for in advance and she could stay as long as she was enjoying it. She says she really enjoys it and the food is lovely. So all is well there.

My DM has been to the memory clinic and they have changed her mediaction from Aricept to something else (will tell you later what it is as I can't rememebr at the minute). The CPN got mum to agre to go to a Day Centre one day a week to try it out. Whilst I think that this would be great for my dad I am amazed that mum has agreed to it and although I am pleased I also see it as a significant 'next step' on the dementia road.

PA - I'm glad your family meeting went well and you have agreed a plan.

gtamom - di you find out what medication your MIL had been given.

thinking of you all xx

Just rediscovered this thread and I am trying to resurrect it.
I was sad when I thought it had fizzled out as I think we could really help each other through this.

So pleased that your DM seems settled and happy and if she thinks she is in a hotel, then it must be good.

Second family meeting last week, a good time again. I have had to step back from my parents for the past few weeks as I have had health issues myself and I know my dad would notice and my mum would worry, so it seems easier to keep out of the way for now.

Hope you are ok, and feel the same as me about this thread.......

Hi everyone.
Daffsntulips - so glad your mum has agreed to go to the day centre; how did you manage this? Also pleased for you that your mil has settled in well to the care home.

PA - I hope your health concerns are resolved quickly. I know how parents can worry, however old you are!

My father has now had a stroke which has affected his peripheral vision on the left side so he can no longer drive. He has also had a good result from the colonoscopy but has been referred for an endoscopy which is worrying. My mother went out and got lost on the way back from Tesco, only arriving honme when I was on the phone to the police - she had returned with three items but the next day when I took them both back to Tesco insisted that she had already done all the shopping and needed nothing! Very frustrating. Mum has her annual memory clinic in 10 days so I am hoping the social worker will have some useful advice.

Yes, let's try to keep this going as it's very helpful to know we're not alone.

Thanks for coming back Leonora .

Sorry that your dad has had a stoke. Can I suggest that the endoscopy is just to see if things are ok from the top end, as the colonoscopy was clear. Hope it goes ok though.

I hope you get some help from the memory clinic.

Hi, everyone.

Does anyone have any experience of this, not sure what to do.

Went to see MIL last week on Wednesday, when I rang the door bell about 10 times she didn't answer. I have a key but couldn't use it as her key was in the other side of the lock.

I walked around the back of the house and all the kitchen blinds were shut. I walked around the front and the curtains were shut. She has always been a no curtains shut during the day type of person.

I walked to the bottom of the drive and looked up and saw her peeping through the curtains, I waved and she came and answered the door, as she knew I had seen her.

She said she was looking for her teeth.

I was sure she was hiding from me but gave her the benefit of the doubt.

I have just had a phone call from my DD she is on her Nans door step and can see her hiding in the kitchen. But she wont answer the door.

I am going in hospital on Friday so my DD said she will look after Mil.

Not sure what to do.

Oh dear Linli, no advice, sorry, but I didnt want to leave your post unanswered.

Does your MIL suffer from dementia? Does she have a nurse she sees, could you mention this to the nurse?

If she had been really hiding, would she have let you see her in the window upstairs?
Has she been nervous about seeing people before?

Sorry, lots of questions and probably no use, it was just questions I thought as I read your post. Hopefully someone will come along who can answer better than me.

Thanks PA

She is suffering from dementia, but hasn't been officially diagnosed.

She doesn't have a nurse or any help other than me, and she lives 30 miles away.

Her Dr says she has to ask him for help, or I have to bring her to him.

He made her an appointment at the memory clinic but would not tell me when it was, so she didn't go.

She refuses to go and I am not strong enough to physically make her.

I have asked the Dr to come to her, but he refuses.

The only reason I saw her at the window was she was wearing bright pink she was watching me get back in my car.

Oh dear. So sorry to hear all this. Are there any other family members who could help?
Perhaps you could contact the alzheimers society and ask their advice. They may have a support group nearby who could give some advice. Or social services?

I realise it is difficult with Drs. The only way I was able to bypass my mum was by phoning and speaking with the DR and starting by saying "I now you cant tell me anything, but she is your patient, my mum, and I want to give YOU information, which I think you should know." You could try that and if you dont get anywhere you could try the practice manager. Surely they have a duty of care of someone who is unable to access it themselves.

I hope you can get some help sorted. An especially bad time if you are going into hospital, too.

Hi everyone; I'm glad this thread is still going.

Lynli - I did as PA suggests, rang my mum's GP and gave him the info/background and my concerns. the surgery then wrote to her and invited her in for a "routine health check" and this started things moving. Best call I ever made.

My update -

MIL is still settled and is putting on the weight she had lost in the last 12 months.

DM - my dad still hasn't had date for her to start at the day centre. I am off work soon so may chase this one up for them as my dad needs it more than my mum really.

Leonora my mum has been going to a sewing class since she retired and my dad has told her that they are now doing a similar one all day and she might enjoy it. It worked and she agreed to give it a try.

They came here a couple of weekends ago and she has got a little worse. She was so excited when they arrived and she kept telling me that they didn't "intend to come here. Thye were just driving and here they are" She wouldn't each much dinner that evening and when I went into the kitchen for somehting she told my dad to stop eating because she didn't know how they were going to pay . My dad did well and quickly responded by telling her that she wasn't to worry as it was all paid for in advance!

TThey are coming for a few days during half term. I hope the weather is good enough to go out and about.

Keep chatting.
x

Great to have you back Daffs.

Its good to hear your MIL seems so settled and good luck over half term with your parents.

Just to let you all know that I am away next week, so not ignoring you all.

Not too bad here, just plodding on, as you do.

Anyone from this thread out there????

I need some hand holding/advice.

Not really dementia advice, but related, iyswim.

I have had a rough few weeks with health problems myself. Yesterday I was told I have a large tumour in a gland in my neck. It needs to be removed ASAP and then I will deal with the aftermath if I have to. (ie: cancer/benign)
Anyway, all through this, I have avoided my parents, other than phone calls because I know they would worry like mad and I could not hide my pain and illness from them if I saw them. The thing is, I know I am now going to have to tell them what is happening and come clean about why I have stayed away. I know it is going to be awful to tell them. I know dad will really worry and mum will forget as soon as I tell her, then will have to have that shock and panic every time she is told, as if it is the first time again. Dad wont cope well and will get angry with mum as well.

HELP how can I do this without worrying them and without causing mum worry. I ahve considered not saying anything, but firstly I dont think I do that, and secondly I know I would not be able to see them, and thats not fair on them either.
Sorry, going round and round in circles, just wondered if anyone could give me any advice on how to do this with the smallest amount of fallout. Obviously I will play it all down and tell them I am not worried at all etc. etc.......

Oh, PA.

I am sorry.
I can't advise you what to do as everyone is different. but I can share a tale.

When MIL was showing all the signs of dementia SIL was diagnosed with ovarian cancer. She told MIL who forgot about it almost straight away but remembered that she wasn't well, but the severity or significance of the illness didn't sink it. It some ways it was good as when SIL spoke to MIL it was always quite upbeat; MIL even telling SIL that she had to go back to work otherwise someone else would do her job and they wouldn't need her anymore!

You are right ... you have to tell them, but their reactions might be very different to what you are expecting. Strangely it may give your dad something to think of other than dementia; he may pass on to you some coping startegise that he may have come experienced.

Whatever you do; look after yourself and keep posting.
xx