Gawd give me strength !!

[Mommidizzle]

ok ......so story so far.... Hubby diagnosed 3 yrs ago with AD (he 69 me 50 )..... memory tests been conducted every 6 months....... usual stuff .... no major changes.

However 3 weeks ago had a really bad fall (not sure what happened i was at work came home to find him with a massive bang/lump on his head and phoned 999, A&E were rubbish and paid him little attention then sent him home same night..........so have asked Memory Nurse to arrange medical assessment which is tomorrow) His confusion and memory have been significantly worse since up to point the that when his daughter visited after the fall he had no idea who she was? and when the other one turned up 2 weeks later then the same !!?? (not my kids and tbh not fans of mine or theirs (2nd marriage and all that..... but all the same his daughters and grandchildren )

i have since reduced my hours at work to be home with him more.......

so tonight trying to explain the appt tomorrow to get the bump on head checked out .............this now apparently this is all about me trying to get his driving license took off him !? he doesnt remember being diagnosed 3 yrs ago, he doesn't remember friggin fallin 3 weeks ago!! but apparently i gotta be careful what i say !! ........................ just needed to sound off guys !! i have spent the last 4 hrs going through this with him! no solution however and he has now gone off to bed in a sulk (cos they gonna take his license!!....) I however have another glass of wine and a fag and am watching Wentworth in peace !!!

Happy Days People x

 

[Rathbone]

Aw gawd indeed! Stay strong and good luck for tomorrow. Make sure you tell them everything you can remember; write it down before you go if you have the chance. Enjoy the rest of your evening.Xi

 

[Mommidizzle]

ok ..........so went today for a medical/memory assessment ??

was very surprised to be shown into a room with a psychiatrist & 2 student doctors ?? along with our 'latest' community memory nurse ?? ok not what i was expecting but see how it goes?? ....... so psychiatrist informs us that the system has changed and while MAC had been dealing with us then it now has been bought back to the NHS ? .... ok ?? but however any previous records like original scan and diagnosis can not be accessed now? so we need to start from here ?? (3 yrs post diagnosis??) talked about OH daughter's concerns that he shows symptoms of PD this was ruled out as he does not have tremours !! he does however nod off frequently, suffer from sweating and struggles to sleep (ok i get that some of this could be the AD)
so student doc does memory/assessment he obviously hasn't covered the pages that cover how to talk to a patient? and conducted the memory test questions while using a pen to wave in his face while asking the questions ?? and constantly checking with doctor as to whether OH answers were right or wrong?? (tbh honest id have smacked him for that!)

the CT scan from A&E from his fall 3 weeks ago showed that the damage was only soft tissue and not a concern, but did show the narrowing of the arteries/veins?? in the brain to confirm the original diagnosis, the memory test however was 12 points lower than 4/5 months ago which i believe was the biggest drop we have had since diagnosis ?? normally drop 2 -5 points and went up a few 4 months ago to 74 today's was 62 i think?

............. so OK guys question ??.... so how big a drop is 12 in 4/5 months?? and do i need to be watching for anything else at this stage??

summary seemed to be:

he aint got PD
his head bang is ok
but as expected his dementia has worsened but i kind of knew that anyway?

so going forward pretty much as is, 6 monthly reviews, they gonna send me out some dementia advisers and suggest a singing workshop ( yeah right like he gonna go there!!)

appreciate your thoughts on this?

thanks x

 

[Canadian Joanne]

Is your husband on any medications? I do wonder about the diagnosis being AD, when he has narrowing of the arteries. That sounds more like vascular dementia but then I'm no doctor.

Personally, I would write a letter regarding the behaviour of the student and how inappropriate it was. I would have been strongly tempted to wave my finger right in his face.

 

[Rathbone]

Hi again. Sorry you both had such a grim time. Joanne is right, write a letter of complaint. The consultant should have intervened at the time anyway. I am a professional in the field and was appalled at the neuropsychiatrist's bedside manner, she treated my OH as though he was simple minded and shouted all the while. I wrote a stinking complaint directly to her. As for the drop in the test score, this is very significant, but little you can do I fear to watch out for anything. Dementia will take its course as it sees fit despite our best efforts; we can only manage situations and 'fire watch'. I am not a medic either, but I again agree that VaD does seem likely. Do pursue this and ask every question you can think and make sure you get answers.
Our AlzSoc Dementia Adviser is now unable to do much support in the community as promised because she is now in clinic every day to help with the pressure they are under to diagnose. Sounds like your service is much the same. By the way, you should hsve been informed of the attendance of two trainee doctors and asked whether you agreed to them being involved. I am astounded at the lack of respect which has crept in to the service since I retired.
Hang on in there and keep on posting and let us know how things are. X Loving thoughts.

 

[Mommidizzle]

Is your husband on any medications? I do wonder about the diagnosis being AD, when he has narrowing of the arteries. That sounds more like vascular dementia but then I'm no doctor.

Personally, I would write a letter regarding the behaviour of the student and how inappropriate it was. I would have been strongly tempted to wave my finger right in his face.

thanks Rathbone ......and all of you for your responses, i hadn't thought about the vascular thing i will get that checked out. He is on Exelon patches 9.5mg which i believe is the highest dose and has been on this since he was first diagnosed 3 yrs ago. Im not sure how long the medication works for? Your right i will think about writing a response to complain however not sure i've got the energy for that right now? i have a appt at our GP next week with him so i will run it past her too.

I have reduced my hours at work so that i only work 4 hrs per day now and that seems to have cheered him up and it his birthday tomorrow so geres t a good week xxx cheers gang

 

[di65]

Hello Mommidizzle.

My husband was diagnosed 6 years ago, and was on a slow but steady decline, following the patterns I had been told to expect. Then - out of the blue two years ago, he suffered a stroke. I found him lying on the front steps, with a bump to the head, so the ambulance and A & E followed. This stroke really gave his condition a shove in the back, similar to the way it has affected your poor husband. Have they eliminated a stroke as the cause for his deterioration? It might pay to get this checked out if not.

Keep smiling

 

[Rathbone]

Happy Birthday to your OH for tomorrow - have a good day both of you. X

 

[Mommidizzle]

ok troops here goes !!??

have been to GP today for results of blood test following fall ...... turns out OH abit anemic so now prescribed iron pills to add to all his other pills !!

however in a convo pre his appt i mentioned to doc about 'narrowing of arteries' (from the CT from his bang on the head) and the possibility of vascular instead of alzeimers and she said then there was high possibility of both being present but as he was on medication for AD then this would also be ok for Vascular too?? i got the impression she wasn't bothered what type?
We also got into convo abut his driving which is not terrible but i have had a few concerns ?? and with the winter coming i am worried about his ability to repond quickly, she then said she would suggest a DVLA assessment if he would agree (which he did) and when i asked if could drive upto the assessment she said no, and she used the last assessment score drop from 74 to 62 as and excuse I'm ok with that as it got me off the hook and we kinda pre sorted that?? however he is now really confused as he drove there in his head fine to drive......now its not ??!! i have told him it was the GP decision and all part of the process as his score has dropped but he just aint getting it!! i have had a whole night of whether he can drive or not ?? who made the decision?? it was my fault i must have said something!!?? why cant he drive?? who's car is that in the drive?? and if its mine then i can drive it then !!?? i have managed to talk him into giving me the keys to the car i hope i can hang on to em !!?

right ok i have called DVLA they gonna send some forms??

anyone know what the next step with them is?? will they do an assessment or just take his license away anyway??

what happens next guys in your experinece?? and am i right in thinking id this is also Vascuar then this dip may be a big one?? i have read it progresses much quicker than AD??

lots of info needed i know ??!! but appreciate your thoughts x

 

[Canadian Joanne]

I know it might be a bit of a pain but would it be possible to have the car out of sight? That might help a bit. What you need now is an official letter from the DVLA but I assume that will come after the assessment. Would the doctor give a letter saying he can't drive until the assessment?

 

[paulineanna]

Driving

When my husband was diagnosed both our GP and specialist said he shouldn't drive, so I thought once diagnosed you had to stop driving. Anyway so that he couldn't blame anyone he would have to see again I contacted DVLA and sent them a copy of the specialists report then they wrote to my husband asking for his license to be returned. I think that's how it worked, don't remember completing any forms.

 

[Mommidizzle]

Hi Troops

.......update on OH and the driving thing...... i have today posted a letter to the DVLA signed by him to say he no longer wants to drive and is surrendering his licence !!

......this took a bit of doing with subtle suggestion from me but eventually he decided he did not want to be assessed by 'some bloke' who didn't know if he could drive or not and wouldn't care that he was a good driver and hadn't had an accident for years!! and that as they are just doing it to get 'disabled people' off the road then it was up to him to make the decision not to drive as they would have used his dementia as an excuse!!??

..................... anyone wanna buy a BMW ??

xxxx

onward and upward my friends ..........!!

 

[Mommidizzle]

well that was emotional !! ..............

i have just sold my OH car .............. and he has gone upstairs for a cry my heart is breaking for him right now, but i know it is for the best however after 50 years of driving i cant imagine how hard this is for him !!

I HATE THIS DISEASE !!!!

 

[Jessbow]

((Hugs)) Very Hard, But you know it had to be done xx

 

[Mommidizzle]

((Hugs)) Very Hard, But you know it had to be done xx

Thanks Jess xx ............i'm very sad right now

 

[Jinx]

well that was emotional !! ..............

i have just sold my OH car .............. and he has gone upstairs for a cry my heart is breaking for him right now, but i know it is for the best however after 50 years of driving i cant imagine how hard this is for him !!

I HATE THIS DISEASE !!!!

I do hope this brings closure but it's three years at least since my OH wrote off his last car and nearly a year since we were told he shouldn't drive any more (he had very occasionally been driving mine) but I'm afraid it's still a daily topic. Good luck and I hope your OH is OK with it eventually.


Sent from my iPad using Talking Point

 

[di65]

Although it will be sad to sell his car, at least it won't sit rusting in the driveway like my OH's one. It is 1990 model which he refused to upgrade pre AD, as it "still went perfectly". Now it is an impossibility to bring up the subject. We had a man knock on the door the other day who had an identical car and was having problems getting parts. He offered to buy it, which was obviously refused, but later on started the whole driving/car discussion again. Thank goodness my car is still relatively new and we don't have to have that discussion