Parkinson/Dementia

[Amorgan]

My dad has recently been diagnosed with Parkinson and vascular dementia. He was in hospital for nearly 2 months while they tried to figure it out. He is now at home in a hospital bed which he is unable to get out of due to on going chest infection. Ive noticed he is chewing his food a lot and I think he may have trouble swallowing. Last night he screamed and shouted because he thought there was a fire and everyone needed to get out. Today he thinks there was a flood and children were drowned and there was dead bodies. He is confused most days now. Its only been 8 weeks since his diagnoses. Is this typical, is it affecting him very fast? I would appreciate any comments. Thanks

[MAS_Nurse]

Hi Amorgan and welcome to the forum. Sorry to hear about your dad's diagnosis. Vascular dementia is a common type of dementia caused by reduced blood flow to the brain. Feeling disorientated and confused is one of the symptoms Treatment aims to tackle the underlying cause, which may reduce the speed at which the brain cells are lost.

A group of symptoms can be found in parkinsons disease including more severe memory problems, personality changes, seeing things that aren't there and believing things that aren't true. Treatments are available to help relieve the symptoms and maintain quality of life. Supportive therapies, medication, and surgery [for some people] are some of the treatments. You may find the following website helpful---Parkinsons.org.uk/information-and-support/dementia. Some people with parkinsons experience problems with eating and saliva control, but there are treatments and techniques that will help, so please ask your dad's GP. I hope your dad's chest infection clears soon. You may also find the pinned posts on the screen helpful. Please stay on the forum where other members will be along to offer support.Thank you and best wishes.

[Amorgan in reply to MAS_Nurse]

Thank you so much for the informatoin

[Yatzy]

Hi Amorgan. My father had Parkinson’s but not dementia...but nevertheless had some repeated imaginary episodes of a more benign nature, such as ‘seeing’ children sitting over from his armchair on the settee and waving to them, or recounting in detail an imagined visit from the Bishop of Norwich - he’d once very much enjoyed a visit to the cathedral some years previously. It has become a byword for exhaustion in our house ever since...’I’ll be seeing the Bishop of Norwich soon!’

He also came home from hospital to a hospital bed, with sides, installed at home. He had carers visiting each day to help him get up/go to bed. He also had type one diabetes and could no longer manage his twice a day injections, and had bladder incontinence, so a bag that needed emptying. The ways we leave this life!! Good luck, and try to keep your spirits up. He won’t be with you forever, then you’ll get back to remembering him in former times. You are for sure a big comfort to him, even in his confusion.

[Amorgan in reply to Yatzy]

Thank you so much. Our dads are similar in ways. Mine also has diabetes and can no longer administer his own insulin. Its been a quick change for someone who was so independent to the form he is in now. So sad. He also gets a lot of imaginary episodes, some very distressing for him and some just innocent enough. He goes back to his working days a lot so he is in a van, he is stuck in a van or has a van that wont start. Sometimes he thinks he is sleeping in the van. And like yourself we do get moments when its like 'I hope the bloody van doesn't break down tonight'. It for sure is exhausting. But like you say he wont be here forever, and I cherish every moment. It just scares me how this will progress and how much more difficult it will become. I hate that he must go through this. Thank you for sharing, it really is good to talk to someone who has been there.

[Glyn2308]

Could this be a side effect from his medication?

[Amorgan in reply to Glyn2308]

I think I need more information, I will talk to his doctor again. None of us feel like we have had things explained well to us

[Debsoxford]

Hi Amgoran

You don't say what care/support Dad/you family members are getting and you will certainly need it if not now but in the future. You are all facing very challenging difficult times, please start looking and asking. your Has Dad had a referral or been seen by the SALT (speech and language therapists)? They will assess his swallowing technique as people with dementia can often develop swallowing problem which is easily dealt with by thickening drinks with a special powder and possibly blending their foods, drinking through a straw isn't good for people with "compromised swallowing" I'm not saying your Dad has but it is a possibility. Hospital beds are great as Dad can be positioned well according to his needs. Yes confusion is all part of dementia and of course Dad also has his chest infection so is feeling ill on top of the dementia all very difficult for everybody, you are all obviously having a lot to cope with in a very short space of time just try to take time for yourselves as well, a lot easier said than done but little things if Dad is having a nap you do to or sit with your feet up the other work will still be there 10 minutes on! Finally try and make sure Dad is hydrated enough preferably water but tea (coffee doesn't hydrate) squash hot or cold etc as dehydration also causes confusion, it's difficult I know but just keep offering drinks even if he will only take 1 or 2 sips at a time it's surprising how much you can get into somebody, (if you can) keep a record of what's drunk so to monitor and rule out dehydration.

Dads thoughts/anxiety are horrid to cope with (for him and you) just try and reassure him his at home and safe etc Big scrapbooks are good to stick happy family pictures in, past hobbies etc to distract him from the horrid things

I hope my suggestion have helped

I wish you and your family all the best for the future

Debs x

[Amorgan in reply to Debsoxford]

Thank you so much Debs it is really helpful.

SALT have not assessed him yet. We had asked for this before he left hospital but he was put on a list we were told and he would get seen in turn. This hasn't happened yet. He is definitely having trouble swallowing. His dentures got lost in hospital, so its a lot of soup or mash, anything soft really. We asked his GP today for meal replacement drinks as he gives up on what he is eating and ends up spitting things out. His water intake is very good most days, thankfully. But I will ask about the thickening agent, if you think this helps. Thank you so much for all your help

[Thoms98]

My husband has Parkinson's and mobility problems. He has not been out of the house for the last 7 years. Unfortunately I have no experienced of care provision for a loved one. It is trial and error trying to access help and support.I have joined all the local charitable organisations to learn more about looking after my husband of 62 years. I am pleased to say I am still able to ensure he has some quality of life. it is a challenge but then life has always been a challenge. the previous ,Debs, made similar suggestions. try and think of your Dad before all this happened. Source support, it is not easy.. I try and keep a positive approach and get out and meet other folks,Book Club W.I. It is not easy and I do give in and have a good cry for what we had, but also try to remember the very happy times we shared together. My children help me with the organisation of our finances for agency help --carers three times a day. Support in the home is required ,I am not able to look after Brian,without support. However dealing with carers is another stress.

Sorry to have gone on but to-day has been hard for me. I really have not a realistic solution

[Amorgan in reply to Thoms98]

Thank you for your reply and please don't apologise, you go on as much as you want, you deserve it. You sound like you have got it very tough with your husbands illness. I am so thankful for the support and care we and my dad has received so far. Carers four times a day, this was set up for my dad before he left hospital and we say everyday 'what would we do without them'. Thankfully we don't have to pay for that, surely this should be available to you to.

I try my best to be positive but like you I have to give in sometimes and cry. But I look at him and I think how lucky I am to have him and spend time with him and to be able to repay the favour and look after him now, as he did for me growing up. Its a privilege. Thank you for helping me stay positive. I really wish you all the best.

[AliBee1]

Hi Amorgan

You have certainly already had some really useful replies. My husband's type of dementia has a Parkinson's element and he was put on parkinson's medication which made him hallucinate badly and for long periods. Our consultant took him off them so it is important to speak with your GP or your Parkinson team. My husband also becomes very confused and agitated when he has an infection and it is often the 1st sign of an infection that I notice. The 2nd one is choking on food or drink, so it could be your Dad's on going chest infection that is aggravating his symptons. Hopefully if they can get the infection under control things may settle down. Just make sure you don't bottle your concerns up, talk, ask and ask and seek help. You've made a good start joining the forum.