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Hi everyone!

My father Inlaw has had Parkinson's disease for 15 years. He is now 72 years old. Up until 2 years ago he was playing golf, gardening and living a fairly normal life but the past 2 years have been a huge decline. He is cared for by his wife and me and my husband help all we can each weekend. We live a 40min drive away so are unable to visit as often as we would like weekdays.

Last night his wife died. He is unable to live alone in their bungalow as he needs constant care. I am due my first child in 10 days time. As he is unable to walk up and down stairs he can't stay at ours as we have upstairs bedrooms and bathrooms. We ideally need to be at our home for when the baby arrives as. My husband is happy to drive to see him every day but we both are not keen on leaving him. Another option is we can move into his home short term with baby once she is born. Travel back home for midwife and health visitor appointments.

Long term he is happy to live closer to us, that way we can visit and help in any way possible. Financially he can afford to rent another house or buy another, without worrying about selling his current home. We would probably require extra care assistance.

Does anyone have any advice or suggestions regarding help? We are going to contact his GP tomorrow because the pills he has been taking don't make sense with the packets. 

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10 Replies

  • Posted

    Hi 

    you need to ring adult social services in his area and explain the situation . They will come out and assess him . They will listen to his wishes and their whole goal is for him to stay in his own home for as long as possible try and be there for the assessment  . So they will set up a care package using a care firm they give you a book containing all the care firms in the area. You choose. 

    If  he  has money it's over a threshold I think  over 15000 you pay a percentage of the bill weekly it's not a lot as care firms charge between 12 to 15 pounds an hour depending on your area. 

    My mother had someone come in at 7.00am every day get her out of bed give her breakfast and shower her 30 mins 

    then at 12.00 they came cooked her a microwave meal (Wiltshire farm foods are ideal) served her desert and side salad if she wanted . Washed up etc 30 mins 

    then at 4.30pm visit again make soup or scrambled eggs or anything she fancied 20mins 

    then at 8.30pm they came dressed her for bed helped her in 20 mins 

    a total of 1 hour 40 mins a day . 

    They always checked she had taken her tablets etc... 

    She could potter round but in off patches would feel rough. 

    I ordered her shopping on line and once a week i made sure I was there to unpack the shopping.

    she had a cleaning lady who did ironing too. 

    Also ask the gp to refer him to the occupational therapists they will come out and adapt the home so he can be independant.. It's free ...They make it safe . 

    My advice don't make any changes for a year . The shock of his wife dying will worsen his parkinsons for a while if you moved him or moved in it might make him worse even more. 

    I did this independant living for 5 years popping in on my mum  then we moved her in with us for 3 years then when the parkinsons dementia sets in which it will she went into. A nursing home . The happiest times for her were in her own home independant . Living with me was the right thing for me and her but it totally exhausted me and I didn't realise how Parkinson's disease ended .... It's heart breaking ... The nursing home was so much better at the end she had happy Carering nurses who weren't heartbroken and she loved me visiting she was secure and safe ... Only lived for 12 weeks in the home... Though ...she was 83 when she died earlier this year...

    So it's your decision but wait a year for any big decisions ... And get a parkinsons nurse to see him if you can as they are fantastic too ..

    hope that helps sorry it's a little sad 

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  • Posted

    I wish I could give advice. My husband has had Parkinson's for fifteen years too. This last year, in fact these last six months, have seen a greater decline. I am his sole carer. I have found that treatment and help seems to vary depending on where one lives and which consultant one has. Social services can be helpful practically as can Age UK. Your father in law is very lucky to have such caring relatives. Have you tried Citizens' Advice as well and do you have a specialist Parkinson's nurse, working with the consultant? The best wishes to you and for your new baby. Please look after yourself too. Sue.
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  • Posted

    Wow Thank You both! This is really good advice and places we can try ringing today. I really appreciate it.

    We don't wanna make decisions too quickly but with a baby on the way it seems to complicate things more than it probably should. I think my hormones got the better of me yesterday and my husband was obviously in deep shock regarding his mother.

    I think my first call of contact will be social services.

    From someone who has never had to deal with elderly parents/relatives I am so grateful for this advice. 

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  • Posted

    We have a lot to learn in regards to helping him. For example he is currently stuck in bed and can't get out. He said this happens every morning, so my husband is trying to see his normal routine.

    Maybe there are things to help him do these simple routines that we never knew he needed. 

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    • Posted

      Hi 

      try and see if he has a parkinsons nurse that you could ring and have a chat with . To explain to you his condition. Everyone's different plus she can pull strings with social services and occupational therapists he should have her number to ring even out of hours...

      Here's a brief explanation.

      the tablets he takes will enable him to move . Without them he will be stuck . So all parkinsons sufferers wake up stuck in bed . They take their tablets and they take about 30 mins to work then they can get out of bed.

      his wife may of got him his tablets each morning so now he needs a glass of water and his morning tablets placed by the bed at night. He may be able to do that himself but is a change of routine. The same problem may happen to him during the day each time his tablets are due he may find it impossible to walk this is called the off period. When the tablets work the on period. The off period they can experience panic attacks stomach pain leg pain etc as their body craves the next dose. He may not be that bad. 

      Occupational therapists have automatic pill dispensers that can be loaded with a weeks pills and they sound an alarm when due and won't stop ringing till you tip the dose out. You can buy them on line. Just in case his wife reminded him to take tablets.

      if he has a neighbour who would for a few days until social services clack in just pop in and give him his tablets at 7am and make him acup of tea. I did that with mum until social services sorted it out. By 8am mum was up and about . 

      although they say they are stuck they can move like a snail it is really hard for them to move as they are trying to but the signal from brain to legs or torso don't get their. If they count out loud while trying to move the signals can get through slowly but it's very frightening for them. But if your husband in an off patch can show your dad that with counting he can make it to walk . He won't be so terrified of getting stuck on the toilet or anywhere in the house he will know he can stagger with a frame very very slowly counting 12345. 

      Get social services on it. And really turn up the tears and how you can't cope . Then they will prioritise...

      thinking of you ..it's tough at first but will all become organised and sorted smile 

       

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    • Posted

      Thank You again. I really appreciate the advice and time it takes.

      We are slowly but surely learning his routine and what to do. For example he had a hot drink with us last night. This was a bad idea as my husband had to get up at 3am to help him pee into a pot in his room.

      So when we asked him he said he doesn't have a drink after 7/8pm and didn't relies the time.

      I have been in touch with adult social care and they are coming to do an assesment on Friday. They have also arranged for occupational health to come and see if there are any adaptations that can be made to the house. Adult social care are going to give us options and suggestions and I've told my father inlaw he doesn't need to make decisions right away but he seems to want to get things sorted just as much as us.

      Today is a hard day as the funeral place are coming to talk to us. The were unable To find the cause of death for his wife so we can't set a date but arrangements can be made.

      We are in complete shock really in all that she did for him. She was poorly and old and managed to do so many things. It's hard to think now that she had that much responsibility. He always wanted outside help and she wouldn't allow it. She wanted to do it herself.

      We are goin back to our house today to pick up extra stuff for us, clothes, hospital bags as I'm almost due baby. We are leaving him alone here in his house. We think maybe we are being too protective. So he has 2 neighbours to call in in him, we will be back in the afternoon anyway.

      Yesterday my family came over. He showed my brother around his garden (over 1 acre) and they picked apples etc

      So once he is up and going he is physically in a decent condition with his walking sticks. We have also left him to his normal routine and he gets in his electric scooter to get papers in the morning.

      At 3 times over 2 days he has fallen over. I'm unable to help with my huge baby bump but we have managed to get him up.

      So adult social care have recommended a lifeline alarm. He can wear it in his wrist and it can be set up to contact '???' Whoever he wants when that happens. We live too far away but there are plenty of people around.

      Then have recommended we buy a keysafe box for nurses and maybe a neighbour to have access too.

      Anyway we are getting there.

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    • Posted

      We'll done . Yes key safe is excellent . He sounds like he is not advanced in parkinsons . Thank goodness . A commode by his bed might solve night time toilet . Occupational therapists will prob suggest and provide . Lots and I think you will find it will all sort out . 

      The goverment are really pushing independant living for elderly and are geared up for it. Sounds like your adult social care on the ball. Here in Cornwall they are excellent .

      parkinsons is all about management of tablets and symptoms . There are lots of options patches , tablets etc to help him not get stuck . My mother had patches once a day and then 5 doses of sinemet during the day . This enabled her to walk with a pusher get out of bed and use her commode on her own , even when she lived with me . 

      Once you understand the illness you will relax a little. 

      My advice don't jump in to living with him etc see how he sorts out. 

      This illness doesn't kill them they live into their 90s and need a lot of care the time will come when he will need full time care whether that's with you or a nursing home ? But for now let the adult social services assess him they will say what he needs . Mine told me she needed a nursing home and it was too much for me to care for her . ( I was surprised as they had to foot the bill for it ) which shows they are professionals they know there stuff and they don't put money first . 

      Let us know how it goes ..

      sounds like there will be a positive outcome

       

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    • Posted

      Thank You again. I really appreciate if. Adult social care are here tomorrow.

      I've been feeling a lot of guilt this week. I feel a bit selfish that I've been upset regarding thinking about his care. I just know having a newborn baby in a weeks time will be tough on it's own and although my husband is doing most of my FIL care right now, I'd really like his support too. You plan your life and plans during pregnancy and when they don't turn out as planned it is hard.

      We have usually eat at about 7, we didn't even think this would effect his routine. So we noticed he becomes very spaced out about 5. It turns out that is when he usually eats. So we have figures that out.

      The worrying thing is he has been an active person his whole life and a hands on, do it himself person. Yesterday my husband went to see the funeral director and I stayed with my FIL. I couldn't find him and he had decided to go up a ladder as there was blockage in the drain. His balance isn't great and he is always swaying sideways. I am sure he knows what is safe for him to do and what isn't but it didn't look safe.

      Being 39wks pregnant I can't help much if he got stuck or fell.

      He has a medication each morning that is injected into him. We wears the injection around his neck and slowly through the day a small amount at a time is pumped into his body. Then he has these booster pens if he needs a boost. Then he has pills 3 times a day. 16 in total. 

      He struggles to fit the injection in the morning first thing but the nurse can do that once arranged.

      Anyway social care will as sea him tomorrow and hopefully we can get the ball rolling.

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  • Posted

    I probably do sound like I'm moaning a bit. It's just a huge responsibility. I'm 28years old and I can cope physically it's just hard while pregnant.
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  • Posted

    I also apologise for my spelling. It's like living in the dark ages here. Small Villiage with bad internet reception and no phone network. So I am responding on my phone and the phone makes up it's own words.
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