1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Still looking for someone in the same boat

Discussion in 'Younger people with dementia and their carers' started by Beannie, Sep 9, 2015.

  1. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    My husband aged 62 has recently gone into a care home as I could not cope with hinm at home anymore. He was diagnosed with Parkinsons in 2010 and Alzheimers Disease in early 2011.

    I am still looking for someone whose Partner/OH/family member/friend is living with the double diagnosis of Alzheimers Disease and Parkinsons. In particular anyone who was diagnosed with these dreadful illnesses under the age of 60. I also post on the Parkinsons Forum but still cannot find anyone else in the same position.

    I think it would be such a relief to find someone else in this position who understands the symptons each disease presents with. I think the thought of the dark/winter nights are making me melancholy. I am 62 myself and life doesn't seem to hold much to look forward to anymore. I have never been one to show my feelings but these days I seem to cry at anything, in fact I am crying writing this!!!

    I am so grateful for all of you wonderful people on TP as I know someone always read what you write and if they can help they reply, which I find a great support at times like this. Never thought it would be me but who does?
     
  2. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    Just wanted to welcome you to the TP community. I'm sure someone will be along soon to advise you with a similar situation to yours as I have read others saying their relative has both Parkinson's and dementia.

    Personally my father has the symptons for both but is in total denial, and supposingly helping to care for my mother with dementia. Some days he's worse than she is! But he has other health issues that he denies, and the other evening told my brother he thinks Mum is getting over her dementia as though she was cured. Can be very frustrating, infuriating and most of all exhausting as it sounds like you have found out yourself.

    I think myself you should visit your GP and tell him how you are feeling as even a chat can help and if they decide medication would just give you a little support than give them a go, we all need that don't we whoever we are? You are probably worn out with everything you have had to do whilst caring for your husband, as well as trying to live yourself and now it's all calmed down you have hit a wall. So just give the GP a call and take one day at a time, this is just a new chapter of your life so try and make it a more pleasant one. Keep us posted won't you?
     
  3. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    #3 Beannie, Sep 9, 2015
    Last edited: Sep 9, 2015
    Hi Mrs Busy

    Thanks for your reply,sorry to hear about your Mum and Dad. I have already been to the Doctors and after talking to him he told me to try and get some rest and start thinking about myself. Sound advice I know but as all of you on Talking Point know it is sometimes hard to follow that advice. The sun has come out here and my best friend has invited me out for lunch, something I couldn't do if my husband was still living at home as I couldn't have left him on his own. I have also booked a holiday with my daughter to Las Vegas in November for 5 nights. I think your advice to take it one day at a time and try to make it pleasant is spot on, so thank you for reading my post and responding. In the meantime maybe someone else dealing with Parkinsons and Alzheimers will find my post.
     
  4. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,237
    Female
    England
    Hello Beannie,

    Lunch with a friend and a holiday with your daughter sounds wonderful and some quality time for yourself. Is your husband in care permanently or just for respite?

    If he is in permanent care then please stop worrying, the carers are there to look after him and to deal with all his needs with both the dementia side and the Parkinson's. You just enjoy the nice parts of caring, having tea together etc. a bit of quality time. Just be ready to voice your concerns if you feel the care is not right.

    There is a man in his early 60's with Parkinson's and Alzheimer's on my husband's floor in his nursing home and he is cared for just as the other 7 men who have some form of dementia. He obviously has medication for his Parkinson's and seems to have no extra problems because he has Parkinson's. Is there something in particular that is bothering you about his care?
     
  5. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    Hi Beannie. My wife Sue does have AD and PD. There are some other similarities. She is 66 but had her first memory clinic referral in 2000 and within about three years it was clear that she had some form of dementia. The first symptoms of PD were first pointed out to me by the GP about a year ago but she had had them for a while. Initially, they talked of her having some PD symptoms but said this didn't mean that has had PD, but now it is clear that she does have PD. Her Alzheimer's is quite severe but I am used to that whereas the PD has been a whole new ball game.

    The Parkinson's site is pretty moribund with many threads never responded to. I'm sure you will agree that this is not the case with TP. It would be good to keep this going as I know there are other people with the double diagnosis.

    The complication of the interplay between the two diseases was one of the reasons why Sue was recently given Continuing Health Care. She is currently immobile after an 'event' 3 months ago but I am still hoping she may be able to walk a few steps with help.

    What are the particular problems that are most difficult in your husband's case?
     
  6. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Hi Jaymoor,

    No I don't have any problems with his care home and yes he is in permanent care. They are lovely caring staff. I think it is the 'G' word that is getting to me. I know I shouldn't feel this 'G' word but it is hard not too. His Parkinsons has left him unable to pull up/down his underwear/outer garments which left difficulties with his going to the loo. He does wear an incontinence pad but he has it there as a safety net. He was also unable to get in and out of bed along with other things, which made me make the decision I could not cope at home anymore, as I too have health problems. He is also losing his power of speech which has been diagnosed as dysarthria and asphasia. One is associated with Parkinsons and the other with Alzheimers. He is going to the Parkinsons rehabillation Unit at the end of September to see the speech therapist again. He also has a lot of freezing episodes where he cannot move. I found him on the floor many times and had to seek ambulance assistance as I am only 5 foot and he is a big guy. I was also up many times in the night as he could not get out of bed and on the nights he could get out of bed he would wander in and out of the bedroom and the bathroom putting lights on and off at times it was like Blackpool Illuminations!!

    Just before he went into permanent care our CPN had arranged for him to attend the local Mental Unit one day a week. This is now coming to an end and I am trying to find something else for him, as I think he likes to go somewhere on his own and thereby keep his independence. I am having a look round a day centre next week. I will have to self fund, which is £48.98 per week!! I also have to self fund the care home, long story!! For whatever reason it is just comforting when you hear of someone else around the same age with the same things as you don't feel so alone in a big boat (crazy talk I know but it is just how I feel). Like I have said many times Talking Point is my lifeline and I cannot thank you all enough knowing someone reads what you have to say. I hope I can be as much support to someone else as well.
     
  7. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    #7 Beannie, Sep 10, 2015
    Last edited: Sep 10, 2015
    Hi Stanleypj

    Thanks for responding to me again. I am sorry to hear about your wife and hope she will soon be able to walk a few steps albeit with help.

    Yes I agree with your comment about the Parkinsons Forum. I think it is very hard to navigate and no-one, as you say, seems to respond. Talking Point on the other hand has been a lifeline for me and I am so grateful for all the wonderful responses I have received and hope to be of some help to someone else.

    In my husband's case it is his movement, in fact this has always been the main problem, since the Parkinsons diagnosis in 2010. He has no strength in his upper arms and therefore cannot wash, shower or dress himself, without considerable help. He has had his Parkinsons medication upped over the last 12 months but quite frankly it doesn't seem to make a difference and he is now starting to hallucinate, seeing men going into the basement at the care home (there isn't a basement) and when he went to look where he thought they had gone he said ' oh there isn't a basement is there. he also told me there was a lorry shedding its load outside the care home, which there wasn't, he did see the funny side eventually. He sees the Parkinsons Nurse now and again but I have to say I find it all patronising. Maybe it is my perception, but they seem to put you into boxes, and they talk the talk, but each person is different but because of NHS cuts, don't get me started, there is no time to talk at length.

    One improvement I have noticed in the Care Home is that he doesn't fall asleep at the drop of a hat when we visit him, which is nice. At home he just spent most of the time asleep, I think because of the physical/mental effort everything took out of him.

    D's diagnosis was pretty clear cut. He went to the Dr's in August 2010 because of his leg freezing and after the usual blood tests was sent for a deep brain scan after seeing the Parkinsons Consulatant, which confirmed the diagnosis and then 3 months later (without any prior warning) we were sent a letter to attend our local Mental Health Unit where he was told Sorry Mr W there is no easy way to say this but you have early onset Alzheimers Dementia as well. There is no cure but you can take 5mg of Aricept (Donepezil) for 3 months and then under the guidance of your GP increase this to 10mg. You may suffer some effects from the increased dose (oh boy did we!!) but persevere and this should settle down.

    The problem I have also had is that D flatly refused to discuss either diagnosis and thought he could take the tablets and it would all go away, ignorance is bliss I suppose. I researched as much as I could. In fact my Auntie had Parkinsons Disease and died of this some 3 years ago. She was in her late 70's at diagnosis (she was 85 when she died) and towards the end of her life would not take her tablets which, unfortunately hastened her demise.

    Added to all this D's two siblings also have early onset AD, his older sister was diagnosed 4 years ago at the age of 64 and his younger sister, aged 55 was diagnosed this year. I am also concerned this could be Familial Alzheimers, and therefore my 29 year old daughter is at risk. She has been offered a genetic test but has said 'No' a decision I fully support at the moment.

    Wow I have rambled on and on but yes I agree it would be nice to keep this going as, as you say there must be other people in our boat.

    If I can answer any Parkinsons questions for you please do not hesitate to ask.
     
  8. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    Thanks Beannie. Sue also dozes a lot during the day though she perks up in the afternoon. I put that down to the Sinemet (is your husband on that ?) kicking in properly after the second dose that she has with her lunch. I think if we can get the dose raised a bit without that causing further complications there might be more chance of getting her, eventually, to stand better and even walk a bit. We are lucky as (apart from the AD and PD!) she is actually healthy and strong, even though she has been more or less immobile for 3 months now. This gives me a bit of hope.

    Sorry to hear the worry about your daughter. I can understand her decision - it might be different if the disease could be cured.
     
  9. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Hi stanleypj

    Thanks for the reply. For his Parkinsons my husband is on Co-benedolpa 12.5mg/50mg (taken at night), Co-beneldopa 25mg/100mg slow release taken at night and Stalevo 100mg/25mg/200mg taken 4 times a day - 8am 12pm 4pm 8pm. Then donepezil 10mg at night for the Alzheimers

    D was a fit very active man before all this. He had a good sense of humour, played squash and snooker. He at times seemed to be on tornado mode!! On a Sunday he could mow the lawn, wash the car, then touch up the paint on the garage, all before Sunday dinner!! He could also walk for miles, especially when we were on holiday. The change in him is so astronomical it is as if someone else has taken him over. Although at times the D I remember and married springs up like the sun coming through the clouds, then the cloud obliterates the sun again until the next time. It is me that seemed to have all the health problems!! I have arthritis in my knees, hands and two ripped shoulder ligaments from falling over due to the arthritis. I also have AF of my heart which all the stress of the last few months did not help and had one or two quite frightening episodes. This seems to have settled down since D went into the CH which is because the stress in the house has been removed.

    The sun is shining here today, as I hope it is with you. My best wishes to both you and Sue.
     
  10. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    #10 stanleypj, Sep 12, 2015
    Last edited: Sep 15, 2015
    Thanks Beannie. That sounds like quite a complex medication regime. But it does interest me because I can see that Sue's medication takes a long time to kick in and I'm only able to give the morning dose around 10.30 to 11 (I have to give it with food) so it's not till after the late lunch dose that she starts to perk up. I suppose the overnight slow release one helps to keep the levels up. Sinemet is also a combination of two drugs (Carbidopa and Levodopa) and comes in similar 'sizes' - 12.5mg/50mg etc. I'll look up yours for interest and see if they are mentioned when we finally get our home visit.

    I'm glad to hear that the real D sometimes surfaces. I feel that the 'essence' of Sue is still there but rarely particularly pronounced.

    We've had a bit of sun today but also a fair bit of drizzly rain.
     

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