Alzheimers and Parkinsons together

[Beannie]

Hello,

This is my first post on the forum and I wondered if anyone can help or give some advice please. My 61 years old husband was diagnosed with Parkinson Disease in 2010 and Alzheimers Dementia in early 2011. He was given tablets for both and for a while seemed to be 95% back to his normal self. However, he would not discuss his conditions as he thought taking tablets would be the answer and it would all go away!!!!

Over the last few months and in particular the last 4 weeks his condition has deteriorated rapidly and his speech is deteriorating and he is becoming disorientated. 3 weeks ago he was begging me to call an ambulance and bring in 'the men in white coats' to put him in a home or else he was going to take all his tablets. Eventually I was able to arrange 2 weeks partially Council funded respite care in a lovely home with caring friendly staff. He now does not want to come back home, a decision I fully support as we have stairs and his Parkinsons was calling him to fall over including up and down the stairs. Also because of my own health problems I am unable to lift him up and have had to call ambulances to assist. He is also unable to shower, wash or dress himself properly. I was wondering if there was anyone out there going through similar things as I feel so isolated. Sorry for the long post!!!!

 

[nicoise]

Dear Beannie,

Welcome to the Forum - I'm glad you have found it, as I'm sure it will help you feel less isolated, there are many on here going through similar challenges as yourself.

Your husband is young to have all these problems and a rapid decline in abilities, it must have been a big shock to you how quickly everything has changed. But I'm glad that you have found somewhere to take care of him that he is as happy with - a major achievement in itself.

Keep reading, there's a wealth of information here alongside understanding company

 

[Beannie]

Beannie

I am really grateful for your quick response and kind comments. I have to attend a meeting at the Care Home with his Psychiatric Community Nurse this morning at 11.30am, feeling very apprehensive!!

Dear Beannie,

Welcome to the Forum - I'm glad you have found it, as I'm sure it will help you feel less isolated, there are many on here going through similar challenges as yourself.

Your husband is young to have all these problems and a rapid decline in abilities, it must have been a big shock to you how quickly everything has changed. But I'm glad that you have found somewhere to take care of him that he is as happy with - a major achievement in itself.

Keep reading, there's a wealth of information here alongside understanding company

 

[nicoise]

Hope the meeting went alright with the CPN, and that you are happy with whatever is planned for your husband.

My mum had Parkinson's, and went on to develop Lewy Body Dementia. She was a little older than your husband, but her decline once she began dementia was swift, both mentally and physically.

At least you can hopefully feel confident that his physical needs are being seen to, as well as safeguarding him whilst his mental abilities decline.

But it is such a big change in your lives once someone goes into residential care. I hope you are able to look after yourself a bit more now, and get your strength up for simple, and hopefully enjoyable, visits rather than full-time caring as you did before.

 

[Beannie]

Beannie

The meeting went well. The CPN is really nice unlike the first Social Worker we had who made me feel as if it was my fault. She is arranging for a care plan to be put together to see what his needs are and if he needs any nursing care. If they think he does need nursing care I may get a bit of funding for him. Sorry to hear about your Mum. Life can be cruel can't it?

Hope the meeting went alright with the CPN, and that you are happy with whatever is planned for your husband.

My mum had Parkinson's, and went on to develop Lewy Body Dementia. She was a little older than your husband, but her decline once she began dementia was swift, both mentally and physically.

At least you can hopefully feel confident that his physical needs are being seen to, as well as safeguarding him whilst his mental abilities decline.

But it is such a big change in your lives once someone goes into residential care. I hope you are able to look after yourself a bit more now, and get your strength up for simple, and hopefully enjoyable, visits rather than full-time caring as you did before.

 

[patsy56]

Hi Beannie welcome to TP, I am not yet in same boat but OH has Parkinson's and which is now I think going int LBD which I pray it is not, so I will be around for a while yet if you ever want to chat.

 

[Beannie]

Thanks for your reply

Hi Patsy 56 many thanks for your response. Has any professional told you your OH's Parkinsons is going into LBD? D's Alzheimers Dementia was diagnosed because of a deep brain scan he had to confirm Parkinsons. We had the Parkinsons diagnosis in November 2011 and were just getting used to that when D had a letter from our local Mental Health Unit in February 2011 out of the blue, asking him to attend an appointment. We duly went along not quite sure why he would be going to a Mental Health Unit for Parkinsons, and when we went into the consulting room the Consultant Psychiatrist said there is no easy way to tell you this but you have Alzheimers Dementia as well as Parkinsons!!! He gave D donepezil 5mg and told him to increase this to 10mg in three months under the guidance of the GP and basically said there was no other treatment he could offer. D asked him how long it would be to which he replied 1,3, 5,10 years who knows we will see you in 12 months and that was that!!! We went home and hardly spoke for about 5 hours.QUOTE=patsy56;1152462]Hi Beannie welcome to TP, I am not yet in same boat but OH has Parkinson's and which is now I think going int LBD which I pray it is not, so I will be around for a while yet if you ever want to chat.[/QUOTE]

 

[patsy56]

hi Beanie, , not yet been diagnosed with LBD but I think it is going that way we have a GP general chitty chat on friday so will bring up and request, also he has a rather funny looking mole I wish it looked at so after friday will let you know outcome

 

[nicoise]

Dear Beannie,

Yes, you're right, life can be very cruel at times....

My mum's diagnosis of LBD came about because of her prior diagnosis of PD, and the way her problems presented were very much of a LBD type.

She donated her brain to Parkinson's research, so I received a post-mortem report on what was found. It did confirm the PD and LBD, but also changes suggestive of Alzheimer's, and signs of a stroke that had not been noticed whenever it had happened. And despite her very obvious PD and LBD, not many Lewy Bodies were found.

So as always with dementia, it is not always clear as to exactly what the diagnosis is, and it varies even within the same diagnosis. It is often said that it is only possible to be certain via post-mortem, and this probably illustrates that pretty well. It did explain a few things we had our suspicions about, but ultimately really made no difference to how she was treated, nor the outcome. But sometimes it just helps to know, and to have something confirmed!

If you are finding that the donepezil is helping your husband, then that is good news. As with PD meds, not all the dementia meds help or are tolerated by those taking them, and things may change over time.

I hope that some help with funding can be found to relieve some of the financial burden. There are some useful fact sheets here on the website. And I'm sorry about the unhelpful SS person - not what you need when life is disintegrating around you. Let's hope the CPN comes up with something more helpful all round!