Well, dementia has been confirmed

Last Monday our specialist confirmed what I had been thinking that my husband has Parkinsons with Lewy bodies. He has been getting more confused over the last few months, sometimes switching from lucidity and confusion several times during the day. Nights are dreadful as he is no sooner put into bed than he is up again, over and over again and last night I don't think he got any sleep at all. He has a compulsion to get up and once he came down to the sitting room and put on the gas fire and then went upstairs and forgot. He has done this once or twice before. We are so tired - sleeping pills make him worse. Excelon patches were tried and he reacted very badly to them too. After 4 days of the patch, he watched something on tv about old people and scams and suddenly he thought it was happening to him and started panicing about his bank account etc and as I run all that he then accused me of being in with the baddies! An hour and a half of your husband ranting at you is quite a stressful experience. He also has a claw hand so can only effectively use one hand which makes toileting very difficult and he needs help every time so I can not leave the house for more than an hour and when I do I am in a hurry to get home. I have employed a night carer for one night a week but this week my husband overruled her and insisted she come and wake me up to go and see him. \i am starting to employ carers for a couple of hours here and there just so I can keep up with my two main hobbies, ie singing and french lessons but cannot find help at the moment to cover my keep fit class or going to church. I am just having a rant because noone wants to know all this but I shall be able to look at this from time to time and hopefully hear from others who are having a similar or worse experience. Thank goodness I am a tough old bird (69) and also lack of sleep makes me able to eat what I like without putting on weight!

37 Replies

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  • Please don't feel that no ne wants to hear...especially when it is something that you so need to get out because sharing helps in so many ways...for you to know you have this place to come to and vent when you don't know what lse to do and too for those of us here who are listening and can learn fro your experience be it the caregiver...or the PDer of which I am. I am noticing tat I am making more demands on my husband and yes there are days that I don't take into consideration just what my husband does go through...w are tying our best to face this PD thing together...but who knows what the future holds for any of us. Thank you for sharing

    and do keep posting to let us know ow you &your husband are doing...Casey inNH

  • Hi Casey - just read this a couple of hours after my rant and we are sitting watching a property programme on tv and the sun is out and the birds are singing and it makes the night seem like a dream. Oh, just noticed that HE has dropped off in his chair! Lucky old him! Thanks for being there. Fx

  • Hi I am sorry you are having a hard time. You will be exhausted and probably feeling guilty, Lewy Bodies dementia is one of the worst forms of dementia and very hard to cope with. You will need help so try get as may breaks as you can. I am a psychiatric nurse semi-retired and nurse people with different forms of dementia, it is exhausting and I can come home at night. You must take care of yourself and remember why you married your man, you are a tough cookie and sound very understanding. wish you all the best and use this blog to have a good moan we are all listening xx

  • Bless you, Carrigan, only people who have seen or lived with it can understand and I know my friends think "oh gosh, here she goes again" if I tell them too much. I feel really isolated and also cross that it is Easter holiday and nothing doing! HE can't face going anywhere or having people really. Thank goodness he has reluctantly agreed to go to a Day Centre once a week. Ironically it is the one where we used to volunteer about 8 years ago! He even knew some of the carers and the cook! Fx

  • Good news about the day centre, perservere with this, their may be days he will not want to go, do not feel guilty you need to break to be able to look after him. You can have a good moan to me anyday. Take care, Easter will pass and the roads will be busy and the weather not good. xx

  • Ha, you are so right - it rained this morning and I can hear the traffic on the bypass already! HE has a fixation about going to the loo this moning and is upstairs hopping on and off every couple of minutes or so. He said me being there put him off so I have a while to myself! I have given him a mild laxitive, drink of apple juice and a banana so feel I have done my bit for the moment. Fx

  • Bowels can be a big problem, most drugs make us constipated, but if it is a problem some of the new laxitives given daily can work such as Movicol, talk to GP about it. But fruit etc are the best natural way. You are doing a great job. Take care xx

  • Meeting you has been so useful! This morning he has still not gone so more cereal, more banana, hot cup of tea and I have promised him another sachet of Movicol type stuff at 9 am. He didn't like the taste of the actual Movicol but GP gave us a slightly orange flavoured one. Sorry everyone about this conversation but HE can talk of nothing else at the moment. HAPPY EASTER!!!

  • Oh, after reading your blogs you are having a hard time but you appear to be coping well and have a realistic view of whats going on. It ok to curse I find it helps. Has he been to loo yet? My hubby does have same probs lets face it how uncomfortable it is to us all if we are honest. Admiration to you ,xx

  • Yes thanks! Will try to make sure THAT doesn't happen again! Of course, he doesn't eat as much as he used to and prefers slightly wetter food. Next problem looming is that I have to go away soon for a week and my sister in law offered to come. Since her offer things have gone downhill and I can't leave her to cope so I think I must look into respite care for HIM whilst I am away. I have mentioned it to him and when he is OK he says its a good idea, but I know that when he gets bad it will be a different matter. Don't we have to be strong and seem mean at times?

  • Yes it appears that way but think of it this way you need a break to be able to continue and care for him for longer. xxx If you break down things would be much worse for you both, go and have a break please x

  • NEVER APOLOGISE for being a carer!!!! You are not alone - you have joined the band of angels who keep this world on an even axis.

  • Thanks for that. Everyone's comments mean so much. Have also popped into church this morning and cried on shoulder of our vicar, much to the astonishment of the children attending the Easter workshop! When I got home and looked in the mirror, I had mascara dribbles round my eyes and looked like panda! Thank goodness I can still laugh at little things. Fx

  • feebee - you are a hero - no honestly you are - please dont worry about letting rip, as you must have someone, or us to listen to you - i sincerely hope that something - meds (?) can help you - or i fear for your health - tough bird or not !

    love To you xxx

  • FeeBee, Thank you for sharing your story. It was a "Wake-up call". When I looked in the mirror this morning I saw your husband looking back and realised that my wife of 58 years may well be facing a problem similar to yours. She would, I am sure, give it her all as you have, but it is not what we envisioned when we promised, "in sickness and in health". If the time comes, I only hope that she can handle it as wisely and as courageously as you have.

    God bless you.

  • I am not always the wonder woman, ronn. I have cried, sworn, jumped up and down etc etc but at the end of the day it doesn't really help. I hope your wfe finds people to talk to, listen to her etc as everyone on this site does. Loneliness inside is one of the worst feelings. Chins up! Fx

  • Understand somewhat. Last night I was up over and over and walking through construction zones, etc. Then it makes me think the same will happen tonight. ;(

  • I know what it must be like, Dennis, - in our case i doesn't happen every night, or not the same way anyway, but I too dread the nights a bit. I try to go to bed later and get up earlier and then the nights are shorter.

  • My husband seems to follow the same as yours although his is being called Progressive Non-Fluent Aphasia. He is so confused, nights are terrible and I am exhausted. He has tried the Exelon patch but I don't think it's working because he keeps getting worse....it hasn't slowed anything down. He thinks people are trying to get his money, people are calling him to come to work, forgets about turning things off, etc. I am not at the point of having to get an occasional caregiver in but sometimes I just want to sit down and cry and wonder why this is happening to him. I have found an all-natural pill called Ashwagandha that I take twice a day and it seems to help me. I saw this on Dr. Oz show where he talked about anxiety and depression. He also mentioned Rhodiola and Sam-E. The Rhodiola seemed to give me a headache and I haven't tried the Sam-E yet since the Ashwagandha is working. I am not one to take prescription drugs so this works for me so far. Hope things get better for you and remember. as a caregiver, you also have to take care of yourself so you can take care of your husband.

  • FeeBee, I am sorry for what you are going through. Do you have any adult children or family members who can help out? There is no need to protect them from what is happening.

    I am glad this is a place you can come to talk about the things you can't express anywhere else. For those of you who are worried about how your loved ones will cope...know that if they are aware of what is happening,they would much rather be involved in supporting you than being left in the dark while you struggle alone.

    Love has lots of ways of expressing itself.Your loved ones are happy for the opportunity to be there for you through thick and thin...even though it may be hard at times.As a daughter who loves a Parkinsons Dad, I am grateful for any chance to show love and support to my Father AND my Mother...I can never repay them for the wonderful unwavering and unconditional love they have shown me over the years...but i can reflect it back to them...

    Even though the situation is not what you planned when you said your vows FeeBee, I know that you are happy your husband is still with you, that you can still hold on to each other.and say "I love you"

  • Lovely thoughts, beautifully expressed - thanks. Unfortunately not all families are the same and due to all sorts of circumstances and even though we have 5 grown up children between us, that sort of support is not really forthcoming. It is not that they wouldn't care, but 2 of them are mine and worry more about me, whilst the other 3 are sorry that their Dad is ill but are glad they don't have to deal with it. They pop up from their busy lives from time to time and chat away. I'm not saying any more as I might get catty!

  • Kat00,

    I'm a daughter of a PD mom. She's weak, stays up all night, and asks me to come care for her so Dad can go shopping. When he's gone she wants him home immediately and cries so many times when I try to help. Crying to is her main emotion now. At night, Dad says she is getting mean with her comments. (She's never said anything mean, swearing, etc. my whole life.) He's so hurt and tired from arguing and staying up at night. (He's not young--mid 70's.) I've suggested a carer, but someone told them a person would just steal. I can't convince them otherwise.

    Mom does worry about Dad. She's scared of him overdoing and becoming sick himself. So am I. My husband tries to assist with moving her physically, he's very good at it. Mom is turning to him instead of Dad. Which, of course, hurts Dad. She says my husband is gentle and doesn't throw her around. Dad is older and tired. He's doing his best.

    Mom doesn't want our daughter (8 yrs), the only granddaughter to see her like this. When they talk, Mom gets confused easily. I've started to repeat myself to get a point across.

    I feel scared at times, worry constantly, and remember the good times. As a family we try to keep it light, but talk about reality. I'm just worried about when I go to work, M/D are alone, my husband is working, etc. There are so many people and I don't always know what is best for any of us.

    (Sorry this is so long.)

  • Please don't leave your Dad alone too much with your Mum, trying to do it all. I am doing that for my husband and you get tired and the care slips and you end up resenting them. It is just the tiredness. I have a night carer once a week for my husband - it is expensive but just keeps me on top of things. As I like to get him up, washed, dressed etc in the morning, I do that, but I am trying to find someone to come in one afternoon a week so I can shop or have coffee with a friend or do a hobby or even sleep. Love x

  • I go over and help out. Plus, Dad goes shopping when I'm there, or out with my husband for the day. I agree, everyone needs a break: Dad and Mom. She loves when I come. We talk about things, she helps me think through my latest project, etc.

  • She is a very lucky Mom xx

  • I love her very much. I just feel upset to see her going through all this and I can't fix it.

  • To all of you, I bow my head and say God Bless Us. I also am dealing with early dementia with my husband. We have recently started him on Aricept and he seems to be much better. I pray I am not reading into anything prematurely. He still gets obsessed about things but it is not as long lasting and luckily, I am a deep sleeper and if he is up all night I am unaware. We have been married for nearly 42 years and it is heart breaking to hear some of his rants. I just shut off my hearing and leave the room till he settles down. We haven't had any safety issues yet but I am preparing for the day. I can leave him for long periods so I do get a break and I am still working part time. My employer is also very understanding and if I need to work from home, they do not mind.

  • Most people do not understand how "invasive" PD is. It affects more than the person with PD. It is also hard on their caregivers who often are neglected and forgotten. Sorry for the pity party but too many friends nod their heads and say they are sorry but they don't realize how a simple phone call can help us and our partners.

  • I totally agree! My best friend has no idea and keeps telling me how well he looks! I have to say she is very good in an emergency and has rushed to find me things when I couldn't leave the house and she and her partner have twice taken us to hospital appointments so I should not feel neglected. Also I know that she does not realize because I haven't really told her BUT I haven't told her because when I broach the subject she swiftly changes it. You and I, w o parky and so many others can say what we like to each other, thank goodness.

  • I agree. I just wrote a long response on this very thing above. We need to stick together. It is so overwhelming, but we love our family members with PD. This person is still in there under the symptoms. If just one person in our lives, outside the situation talks, listens, etc. it means so much.

  • I need a sounding board at times and am grateful for my daughter. I don't always need someone to do something but I do need to vent now and again. I don't try to reason with my husband because when he gets in a mood, it only makes it worse if I speak up. I am so glad I found this forum. It is good to know I am not alone.

  • Me too - also I am gradually getting a few people round me for support and I feel so much better. I am starting to dig up a little vegetable bed in the garden and the sun and the blackbirds looking for worms and the dirt on my hands was great!

  • I need to turn my garden over. It was 80 today but way to windy to work. I'll try again on Wednesday when it will be around 50. Gardening is very relaxing for me.

  • Me too! I can see a carers horticulture club beginning! (Just kidding, but it is VERY good for the soul)

  • hi

    i have PSP p for which there r no drugs to take and nothing apart from keepgin stress levels down with exercise tai chi etc

    btu hte bowel problems are a BIGPROBLEM for me and i take Movicol each am

    A couple fo glasses of red wine a tnight and chocolate all help plus i have always had d a high fibre diet and eat lots of fruit

    The dmentiai sid e must be daunting fo ranyone - the patient /carer/ family and friends

    1 ro 2 peopel on this and the psp site have sat down and talked iwth family about exactly wha t is wrong / what help can and neeeds ot be i

    given etc

    so eveyroen needs a chance ot see hwo diffficult it si for you both to manaage

    i have a carer who comes in twice a day to look after me - and i tend ot fall less when she is with me

    and she encourages me to go out with her wihtout criticising if i do not feel up to it

    point is

    I do nto hav e dementia and shall nto get ot the age where it is likelhyo to kick in

    2 i really thinkyou have to do the bes t for yourself as a CARER and have the breaks you need

    3 htink about meds for yoru husband for teh dementia4

    4 respite care is good so iam told and neede for you and yoru husband

    lol Jill

    xxx

  • Thank you Jill for taking the time to reply to my rant. I am actually more fortunate than others in that we can afford some help, it is just that we live in a very country area and getting the right help is hard. We are gradually weeding out the people my husband doesn't get on with and trying to increase the hours of those he is happy to be with. The fact that he only has use of one hand/arm is a big thing for me and the physios are asking me to try to get a folded flannel under his tightened fingers and it is so painful for him. They also ask me to give him exercises, correct his posture and get him into bed a different way from what he is used to! He also has trouble with saliva build up and he forgets where the best place to spit is and one always has to be on the look out! I can cope with anything but not all the time, especially after a night of constant upsets where he sees another man in the room. This morning he saw a sheep on a plinth in the room and I told him I'd rather it was a sheep on a barbeque and we did laugh. Thank goodness for laughter! Feee

  • Hi FeeBee, My dad is 83 three and has Lewy Body Dementia. Many of the things you've said about your husband remind me of him. Sleep disturbance, hallucinations... We have tried the coconut oil supplementation and since we've stabilized him on an intake of 4 tablespoons/day, his dementia has stabilized quite a bit too. The severity of his episodes have really tamed down. If we don't give it to him regularly -- at every meal -- his stubbornness can be quiet extreme. With it, he is placid, though the dementia will still roll in and out like the tide.

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