Frustrated and annoyed!!!

[tiggs72]

Just needed a rant!!! After dads fall last week I managed to get a review apt with the memory clinic - hoping to get a referral to the fall clinic and finally some more answers to his deterioration and sudden decline. Was really hoping they might finally prescribe some medication to slow this awful disease down.

Took the afternoon off work - raced over only to get a call saying they had to cancel the meeting and I'd need to wait for a call to rearrange!!!

Feel let down, frustrated and had been clinging on to this meeting!!! Not sure why I was pinning my hopes on it so much but now feel really deflated !

 

[Izzy]

Oh my goodness - you are entitled to a rant. How frustrating for you! x

 

[cheryl k]

frustrated and annoyed

I feel for what you are going through. When this became so very noticeable with my Dad, I went to our doctor with Dad and he prescribed a drug named Namenda. Dad is moderate stage of dementia. This drug has helped slow the progression of the disease, there is not a drug to stop this awful disease. I hope this helps. Keep us posted.

Cheryl

 

[Izzy]

Hi Cheryl.

I see that Namenda is another name for Memantine. My husband has recently started taking this after years of Aricept then Exelon. He seems to be suffering some side effects. I wondered if your dad had any side effects when he started on this.

 

[Dikimiki]

Namenda

I feel for what you are going through. When this became so very noticeable with my Dad, I went to our doctor with Dad and he prescribed a drug named Namenda. Dad is moderate stage of dementia. This drug has helped slow the progression of the disease, there is not a drug to stop this awful disease. I hope this helps. Keep us posted.

Cheryl

This drug also named Memantine gave my wife hallucinations. She saw and entertained "invisibles' which at first were friendly but later became enemies and murderers so other drugs were prescribed to curb the hallucinations. Also it did not slow the disease, in my opinion, nothing does!

 

[Izzy]

That's very interesting. As I said my husband had just started on Memantine. He seems quite 'troubled' just now and massively tired. More confused. I was told Memantine will not slow the progress of the disease but reduce agitation and help with day to day activities like getting dressed. He has only been on it 3 weeks and I have to decide if he will continue in it or not.

 

[tiggs72]

Hi all

Thanks for the support - he's at the later end of the moderate stage with a score of 5 out of 30 on his last memory test. I was so hoping they would try some medication to at least slow it any further

I am worried about side affects though - going to chase again today for another appointment! X

 

[Izzy]

My husband has a similar MMSE score. I'm hoping the side effects of Memantine are transient as the doctor said that it was suitable for people with this stage of Alzheimer's.

I do hope you have luck with an appointment today.

 

[lin1]

Hi Tiggs
I hope they give you another appointment quickly, they used to break appointments with my mum , we would get a call perhaps an hr before , saying sorry but...
it was sooo annoying but at least I didnt have to have time off work like you do, if I had , I would have been furious

Hi Izzy
Re the Ebixa, it did slow mums dementia down for a little over 2 yrs , but did not help with the agitation at all

 

[Izzy]

Thanks Lin. Bill isn't agitated so I hope it eventually does help him. x

 

[fruelim]

so sorry to hear your rant and your entitled m8... my mom fell 2 years ago before she was diagnosed with dementia i got her to have a head scan and came back as dementia aswell as learning difficultys. i got in some people to put rails up for her all over her flat and walk in shower and a toilet raiser and arms. i done this all myself i havent even done anything like registering her anywhere or joining or getting intouch with some organisations for help as i hope i can do it alone but feel i might have to get some extra help when she comes out of hospital i just waiting to see what help i am offered. but good luck and hope you got some relief from your rant

 

[Kathphlox]

so sorry to hear your rant and your entitled m8... my mom fell 2 years ago before she was diagnosed with dementia i got her to have a head scan and came back as dementia aswell as learning difficultys. i got in some people to put rails up for her all over her flat and walk in shower and a toilet raiser and arms. i done this all myself i havent even done anything like registering her anywhere or joining or getting intouch with some organisations for help as i hope i can do it alone but feel i might have to get some extra help when she comes out of hospital i just waiting to see what help i am offered. but good luck and hope you got some relief from your rant

You should get Power of Attorney if you haven't already done it and look into getting Attendance Allowance, also the council tax disregards. My Dad got a 25% reduction as he lived on his own before he was diagnosed, I discovered that 'People who are severely mentally impaired' are entitled to a disregard and he got a full refund from the date his Attendance Allowance started. These are things they don't usually tell you about unless you ask

 

[nerak]

I feel for you, frustration has turned to ANGER 2 wks now been promised a visit from the nurse(nobody has any manners anymore no call no apologies)

Havnt cleaned my mums room in 3 days and its starting to smell I want the nurse to see how shes living SHE GOES MAD IF I GO NEAR IT OR OFFER TO CLEAN IT.

I need professional help and they want to assess her again.


HAve smoked and smoked today as fed up with empty promises just wish I caould win the lotto and pay for a fulltime nurse

 

[tiggs72]

I feel for you, frustration has turned to ANGER 2 wks now been promised a visit from the nurse(nobody has any manners anymore no call no apologies)

Havnt cleaned my mums room in 3 days and its starting to smell I want the nurse to see how shes living SHE GOES MAD IF I GO NEAR IT OR OFFER TO CLEAN IT.

I need professional help and they want to assess her again.


HAve smoked and smoked today as fed up with empty promises just wish I caould win the lotto and pay for a fulltime nurse

Hi nerak

My nicotine consumption has gone they the roof as well!
I have secured another apt next Tuesday fingers crossed it goes ahead - at the end of my tether between trying to work full time and trying to get poor dad settled!

They are proposing trying him on Donepezid (??? Not sure if that's spelt right) depending on a review of his ECG results - no idea if its worth even trying this or not - if I will just make things worse for him or not!!

My best mate is now taking over his cleaning and shopping for him just so we can keep him at home and comfy! I dread to think what happens to those who don't have family and friends!

X

 

[nerak]

What a GREAT FRIEND!!!!!!!!!! Good for you!!

My sisters friend is a doctor and thinks if it gets to it meds do nothing?? I dont know we are far from that stage yet.

I suppose everyone is different some are calm others agitated?

 

[Care.daughter]

Coconut oil

Since I am just a new member, maybe I am missing to read if anyone has posted about coconut oil? Has anyone tried it on your loved ones? Have you seen any results? I tried it with my dad but have not been constant enough (3 spoons per day ideally - he only takes half or 1) to notice any changes. He was more alert and fluent speaker when he started taking it, though.

In case (I doubt it) you have not heard the full study and story about coconut oil, here is one of several links. I even wrote to Dr. Newport as soon as I learned about it and she replied back! (well, maybe someone else from her team):
http://www.abcactionnews.com/dpp/ne...l-helps-reduce-symptoms-of-alzheimers-disease

Blessings to all!

 

[tiggs72]

Since I am just a new member, maybe I am missing to read if anyone has posted about coconut oil? Has anyone tried it on your loved ones? Have you seen any results? I tried it with my dad but have not been constant enough (3 spoons per day ideally - he only takes half or 1) to notice any changes. He was more alert and fluent speaker when he started taking it, though.

In case (I doubt it) you have not heard the full study and story about coconut oil, here is one of several links. I even wrote to Dr. Newport as soon as I learned about it and she replied back! (well, maybe someone else from her team):
http://www.abcactionnews.com/dpp/ne...l-helps-reduce-symptoms-of-alzheimers-disease

Blessings to all!

Hi care daughter - welcome!

I posted a question about this last week - will see if I can find the thread for you. I had lots if useful replies - I'm still debating this one as my dad is a late diagnosis and his dementia is now quite far on so I am wondering whether to try this or medication or not at all ?? Some people think it helps others not so positive?!

I joined over a week ago and already don't feel so alone! I've tried to deal with it myself but there comes a point when no matter how supportive partners and friends are you find you need people who are living and experiencing the same things day in day out .

I read your story - my dad hit a period of depression when he was stopped from driving (literally as he was diagnosed he had a crash) he has gone down hill rapidly since then - I think it was the routine of driving that kept him going for so long.

Keep posting you will get lots of help, support and virtual hugs! Xx

 

[cheryl k]

namenda

Izzy

My Dad is in a very low dose. I believe 10 mg. He has been on it since last February. I asked our pharmacy for help. They explained it would help slow down the progression of the disease not stop it. It has helped Dad stay in his own room in an assisted living facility so far. Before taking the drug, Dad was getting angry verbally and physically, wondering into other peoples rooms, not knowing how to go to the bathroom. One day he did not know his pants were wet all day. Just lately I have noticed little things where the disease is starting to progress again. We have started to use depends, having to help tell time, change clothes when dirty, how to eat so the disease is rearing its ugly head.

The comment on hallucinations is interesting because last week Dad told me he is seeing butterflies and this glob that appears on his chest. This glob is non menacing at this point,but I will watch after these comments. Thanks for that info.

Hope this helps

Cheryl

 

[tiggs72]

Izzy

My Dad is in a very low dose. I believe 10 mg. He has been on it since last February. I asked our pharmacy for help. They explained it would help slow down the progression of the disease not stop it. It has helped Dad stay in his own room in an assisted living facility so far. Before taking the drug, Dad was getting angry verbally and physically, wondering into other peoples rooms, not knowing how to go to the bathroom. One day he did not know his pants were wet all day. Just lately I have noticed little things where the disease is starting to progress again. We have started to use depends, having to help tell time, change clothes when dirty, how to eat so the disease is rearing its ugly head.

The comment on hallucinations is interesting because last week Dad told me he is seeing butterflies and this glob that appears on his chest. This glob is non menacing at this point,but I will watch after these comments. Thanks for that info.

Hope this helps

Cheryl

Hi Cheryl

Thanks yes it does help - you mention hallucinations , this is part of the reason the want to trial him on it?!

They do feel his heart problems may stop him from even being able to try . There is another topic in this forum on this very drug - it mentions cramping legs and agitation.

It so hard to know what to do for the best .

Hope you and your dad have a good day xx

 

[Izzy]

Thanks Cheryl. That's helpful. Bill doesn't have any anger or behaviour issues. I am hoping it will help with his day to day activities.