Dementia's lesson is that everyone is affected differently.

[wightdancer]

The biggest problem with understanding Dementia is that everyone who suffers from the disease is affected differently; so it is impossible to try and chart out stages and future expected problems.

My dear wife was diagnosed in 2014 and has slowly got worse to the point that now she does not know who I or our children/grandchildren are and is unable to speak intelligibly. However, she can still walk slowly, still feed herself with a fork or spoon and is fine going to the toilet as long as she is taken regularly. She might sit there for half an hour before anything happens but we never have accidents at night for instance.
She won't take medication in liquid or tablet but I get around that by breaking the tablets up (not crushing) and mixing them with ice-cream and small bits of chopped up chocolate to disguise the bits of pills.

4 years ago I had a lot of problems with her being angry, aggressive and incontinent but by trying different prescribed medication we managed to first eradicate the incontinence and then the anger. Now, the only medication she takes daily is Sertraline 100mg and maybe once or twice a week Zopiclone to help her sleep.

I strongly recommend carers to work with their doctor to get the medications right because each Dementia victim is different and a positive response to the right meds will make a major difference to the quality of life for patient and carer!

 

[canary]

So very true @wightdancer

 

[Bunpoots]

Absolutely @wightdancer . I was relieved dad’s doctor listened to me as his medication was causing chaos and it looked like he was heading for an EMI carehome. I looked after him at home for a further 3 years once it was sorted.

 

[Duggies-girl]

I was so lucky with dad, he stayed exactly the same from beginning to end. He did odd things of course like pruning of house plants and moving things but mainly it was just his memory that was affected. The short term memory was all but gone in the end and he lost the ability to do simple things like turn the TV on but he remained the same person. I count myself lucky and I always think that I had it easy really.

The hospital stay though was an exception and that was 3 weeks of hell.

 

[White Rose]

I strongly recommend carers to work with their doctor to get the medications right because each Dementia victim is different and a positive response to the right meds will make a major difference to the quality of life for patient and carer!

You are so right about this. I've been putting up with my partner's anger and bad language, not just to me but to carers and visitors as well for a couple of years. A change from Donepezil to Memantine a few weeks ago seemed to solve the problem of anger but produced other issues, such a worsening of spatial awareness. Meaning amongst other things that he has trouble sitting on the toilet properly and was failing to understand what to do when he got to the toilet! I also found that increasing the dosage (it graduates from 5 mg to 20 mg) was having no benefit but causing worse problems such as reduced mobility. After speaking to the GP she agreed that he would stay at 10 mg but I'm currently trying no dementia medication at all (after 4 1/2 years on Alzheimer's meds) to see if it improves the mobility and spacial awareness. But why should I be doing this myself? There should be an expert regularly monitoring him and who we can talk to about tweaking meds and other things. But like I've found throughout this whole dementia experience, we are on our own, GPs' knowledge seems to be limited and we haven't yet managed to get a memory clinic referral. Without the Alzheimer's Society and this forum I would be in the dark about everything to do with this horrible disease.

 

[Gorgeous Gail]

Wow @White Rose what you have just said has shocked me. Could it be that the medication that my OH is taking for his Alzheimers is actually making him worse?? I really feel that his mobility and spatial awareness has deteriorated rapidly since he was first diagnosed in January. He is supposed to have a mild peripheral neuropathy and be in the early stages of Dementia but his mobility is so bad that I am frightened for him to go out of the house unless I'm with him as he is so prone to falling around the house. I have just spoken to the Doctor again this week to arrange for OT to come to the house to assess him, to see if anything can be done to improve his mobility and ability to lift himself. He has also recently been prescribed Sertraline for depression after I made a distress call to the Doctor when he was saying he just wanted to die and wanted tablets and whisky.

 

[White Rose]

Could it be that the medication that my OH is taking for his Alzheimers is actually making him worse??

Well the fact is we don't know - does anybody know? I'm frustrated beyond measure with it all. If you read up about Donepezil and Memantine you get 'experts' (in inverted commas because we don't know if they really are experts) saying that these drugs make little or no difference. I am pretty sure that Donepezil caused my partner's stroke after he was first started on it. Some PWD are prescribed Donepezil and Memantine together. Of course we have no way of knowing what the outcome would have been if our PWDs were on a different course of medication or none at all. I've always tried to keep my partner's mobility going, he even had a very expensive personal trainer for a while. Perhaps you could see if physio or gym might help your OH.

 

[Gorgeous Gail]

Well the fact is we don't know - does anybody know? I'm frustrated beyond measure with it all. If you read up about Donepezil and Memantine you get 'experts' (in inverted commas because we don't know if they really are experts) saying that these drugs make little or no difference. I am pretty sure that Donepezil caused my partner's stroke after he was first started on it. Some PWD are prescribed Donepezil and Memantine together. Of course we have no way of knowing what the outcome would have been if our PWDs were on a different course of medication or none at all. I've always tried to keep my partner's mobility going, he even had a very expensive personal trainer for a while. Perhaps you could see if physio or gym might help your OH.

He was just looking into physio and gym sessions before lockdown but now just waiting for everything to start up again. I am just waiting for the community occupational therapy team to make an appointment to come to the house to see how he staggers around holding onto anything he can to walk around the house. Hoping they can give him some kind of exercises which he can do easily to help him build up the strength he needs in his legs to push himself up and his upper body to pull himself up.

 

[White Rose]

He was just looking into physio and gym sessions before lockdown but now just waiting for everything to start up again. I am just waiting for the community occupational therapy team to make an appointment to come to the house to see how he staggers around holding onto anything he can to walk around the house. Hoping they can give him some kind of exercises which he can do easily to help him build up the strength he needs in his legs to push himself up and his upper body to pull himself up.

That does seem early in the dementia for his mobility to be affected. My partner was diagnosed 4 1/2 years ago and his mobility was good for the first couple of years and has been a slow decline since then. I hope you have some luck with the occupational therapy team.