Hi, I have moved my mum in as she was struggling to manage with her parkinsons. She is always with it mentally. We set up alexa reminders, she knows her medicine times/intervals and has a large clock in front of her. I put her tablets in a daily dispense box with 4 compartments (dossit box is it?). But we’ve noticed she is taking them at random times and when asked says she hasn’t, they dropped, my kids took them. I cannot understand why. She makes complete sense with everything else. I have kids and am not always home to dispense them. Any advice?
Sorry, no advice but I also use alexa for reminders for my husband, one on the hour when he is due to take pills and a further reminder questioning whether he has taken his pills about 20 minutes later. He still forgets to take them now and again because he becomes absorbed in the book he is reading.
This may seem silly to you when you have clearly got your mother’s medication sorted and organised but when you have to take tablets several a day it can be surprisingly easy to forget where you are in the routine. My tablets are put into blister packs by the local chemist and on more than one occasion I’ve gone to get my next dose only to find I hadn’t taken the one before. Usually this is because I am engrossed in something and in true Parkinson’s style get somewhat obsessive about needing to finish it before doing anything else. This perhaps happens to your mum, she may hear alexa and even cancel the alarm but if engrossed in something won’t get up to take her medication but carry on with what she is doing until it is done. In addition if she is like me, I don’t come to a grinding stop when my meds are due - I can manage if I’m half an hour late but pushing it a bit if it heads towards an hour; it’s more awkward but I can still do it. She may be making excuses about why she is not taking them at the right time - although this is guessing because I don’t know her - because she doesn’t realise how engrossed she is or see the obsessive nature of it so doesn’t really understand why she is not taking them on time and doesn’t want you to be angry or disappointed in her. I am aware of this but it doesn’t stop me carrying on with what I am doing even if I have set an alarm.
It is not an easy thing to explain to someone who hasn’t experienced this. I can almost hear you saying but it takes a few minutes to take the meds if she took them when alexa sounded she could be back doing whatever in next to no time. Parkinson brain doesn’t work like that - you can’t stop until it’s done, you have to do something immediately you can’t wait for x y or z. It is a very difficult thing to ignore.
This may not be the reason for your mum’s random timing of her meds but tt could be a possible explanation. What you do about it depends on its impact. It’s not a particular problem for me because I have a bit of leeway with my timings. If that’s not the case with your mum you may need to rethink and maybe get caters in to emsure her meds are taken at the right time.
Contract occupational therapy. There is a lockable timed pill dispenser which you can load for 24 hrs. The pills are only accessible at the set times when an alarm goes off. This still does not guarantee she will actually take them though but probably worth a try.
Thank you all for your advice and comments. It is also helpful to understand it from the patient’s perspective. I did call occupational health at Edgware hospital but they couldn’t offer much advice. The GP said blister packs may not work if she cant push the tablets out and won’t stop her missing doses at the right time. I have been setting my alarm for 5.50am and through the day to administer her meds. If out I have only been going for the timing of one dose. It is all consuming. As a result she is more stable but also is finding things harder with walking and getting out of bed. I see that things are getting worse. Mum doesn’t want to do much these days. She is 85 soon. She has had parkinsons for 8-9 years now. I try to get her out to do more whilst she can on a good day. Frankly I am not sure how much longer I can continue caring for her and my young family and working. My inlaws are unwell also. I did broach the subject of a care home. I am trying to work too and my husband travels or is always working. It is draining. Like all carers, we are doing our best! Thanks
On the back of your last post, I just wanted to say you have my respect for even broaching the subject of a care home. Generally the posts I write are quite well received, the ones that I am criticised for is when I write that carers do not have to continue the caring role for ever and a day. They can choose to continue and that’s fine but they don’t have to. I usually get comments along the lines of I don’t understand what the relationship really means if I can just say you don’t have to do it, it’s much more complex than that. It is however precisely because I do understand that I will continue to say what I do because carers have a right to know. I have never suggested these decisions are easy or that the system is perfect but many carers will not admit it’s getting too hard or they are not cut out to be carers once the role becomes significantly more difficult or heaven forbid, actually admit they just don’t want to do it any more because they have no life. So to read that you have broached the subject is a brave and honest appraisal of the circumstances in which you find yourself - many can’t or choose not to look at their
situations with such objectivity
I also think care home are too frequently portrayed negatively. We too often speak of putting someone in a home like that’s the end of their life almost akin to a prison sentence. Taking time to choose the right home, can mean that person can blossom with having people to talk to and with activities and things to do. Conversely to not see what is happening or burying your head in the sand can be a recipe for disaster. It often falls apart completely when the carer can no longer carry on and you are then almost always dealing with a crisis situation which are rarely successful at the outset.
Maybe you will decide the care home option is best for everyone. . Maybe you will continue as you are. I don’t know what you will ultimately decide to do. but you have in a way perhaps already done the hard part - in writing your post you are acknowledging that the status quo may not hold and alternatives may need to be found. You are undoubtedly facing a crucial time. However I have no doubt that your ability to see your situation as it really is will actually lead you to make the right decision for everyone involved at the end of the day.
I wish you luck with whatever you ultimately choose to do - or not do.
Hello everyone, the subject of care homes and when it’s the right time to consider this as an option, has been so clearly addressed by Tot. And if I may say so Tot, I’m aware that you are writing from the position as a pwp and not a carer, and it’s this that stood out for me in your post and I must commend you on your empathy with carers while dealing with the difficulties of Parkinson’s yourself.
I am the sole carer for my husband who was diagnosed 8 years ago. Initially the only thing I needed to do for him was to remind him of his meds. At this early stage he managed his own medication, carried on working part- time (as he was semi-retired when diagnosed) and life carried on pretty much as before. Fast forward eight years and it’s a totally different scenario. He needs help showering, dressing, getting into bed, getting up from chairs and in and out of the car. I must point out though that when his meds are fully working, he can manage these tasks with either no help or minimum assistance. He has developed problems with bowel and bladder urgency, the former of which causes so much stress. The recent diagnosis of early onset PD dementia is yet another added challenge to deal with. There are days I’m absolutely exhausted and when you are older yourself with your own health conditions, the strain of caring can take a great toll on your own health and wellbeing. So, now on to the thorny subject of care homes. Again I agree with Tot. We are all different people with different personalities. There will always be those that will carry on caring for their partners at home til the end, and those for whom the job simply becomes totally overwhelming. It’s acknowledging before this happens that it’s time to concede defeat. I certainly don’t think that if the time comes when I can no longer give my husband the care he needs at home and I decide to look into a care home for him, that it means I don’t care about him anymore, quite the contrary. And who knows it may be my family making that decision for me one day… Another point I’d like to raise is of course the subject of cost. Good care homes are extremely expensive and not everybody has the money needed to pay for their loved ones to go into care.
At the end of the day you just have to make a considered and well thought out decision if and when the time comes for a care home to be the best possible place for both the pwp and their carer and their respective qualities of life. Best wishes to all. Jean
A late response I’m afraid, but some really interesting things here. I care for my husband who is 9 years into PD so much of what is said here resonates with me. Firstly, the pill dispenser - the TabTime was a game changer for us. We had problems with pills being missed or taken at random times. The TabTime was pricey (£70) but worth every penny for the stress it saved. It’s a circular lockable, rotating pill dispenser that sounds an alarm when it’s pill time. The alarm is insistent enough not to be ignored but goes on for up to half an hour (it stops when you tip it over to get the pills) which gives you time to finish what you’re doing/get there if you’re a bit slow but not forget in the meantime. Didn’t know about the “have to finish” thing, Tot! That’s good to know! It also alerts everyone else in the house which is good because quite often I forget too! Can do up to 6 doses per day which is good as the dosset box only has 4 blisters and we need 5! I only need to top it up twice a week which is a real time saver for me.
On the caring front, I really sympathise with Jean and Mum101. I’ve been in both of your positions as daughter and wife. I think it’s crucial to set parameters of what you can and can’t do, and to operate the 60/40 rule. If it’s right 60% of the time, we can let the 40% go. Easier said than done I know, but it’s easy through lack of support and/or guilt to end up doing more and more until you become so exhausted and resentful that you give up entirely, which is the worst outcome for everyone. Hopefully it’s a two-way agreement with your caree what you do for them, although that’s easier with some personalities than others! I had to do distance caring for my mother up until her death in January - I’m in London & she was in Glasgow. After nearly killing myself going to and fro once a month to spend a week cleaning and sorting out the household bills, etc etc for a year I had to come to terms with the fact that it wasn’t sustainable. By that time my husband was ill too. I resolved to do what was possible from a distance - finance, admin and advocacy - to the very best level I could but visit less. Miraculously that prompted a referral to sheltered housing for her and a care package. I was often rebuked for being a neglectful daughter (and not just by my mother), but she was always safe and financially secure. I’ve also noticed that the burden tends to fall on one person’s shoulders (and not just in my case) unless they make it abundantly clear they can’t do it all on their own. Sometimes this involves bursting into tears in front of Social Workers or giving verbals to OTs (not my finest hour) but that’s part of being an advocate for your loved one.
I found it helpful to go to a third party when things got really tough and ask them to help me make a plan for how I would cope. Not a friend or anyone connected with the family. I was lucky enough to find a counsellor to talk to for a couple of hours.
It’s good to get a perspective on care from the PD sufferer’s point of view. I’m currently noticing a decline in my husband. He needs much more support with day to day living and he is feeling this too. Unusually for him, a very upbeat person, he is beginning to show signs of frustration and depression. I have gently introduced the idea of downsizing to a house with no stairs. We’ve already cleared a lot of stuff out of the house and it feels like the end of something. I’d like to have a conversation with him at some stage about what he wants for the future but it’s a difficult thing to do. Not least because it’s upsetting for me too. At the moment, we can still have meaningful conversations but that may not go on for much longer as his dementia progresses. We’re managing without carers at the moment although we had some for a while last year after a spell in hospital. Some of them were absolutely brilliant, some were absolutely awful so not particularly looking forward to revisiting that experience. At the moment I’d like him to be at home because I would miss him, but who knows how I will feel later down the line. Or how he will feel. Moving into a care home is not always the worst outcome. A good care home offers a level of professional care that is better and safer than anything an average person could offer. When my mother finally moved into hers she loved it. She had more company during the day than she’d had for years and her sense of relief that everything would be taken care of for her was very evident. But my goodness, it was expensive. Thank you for sharing your thoughts and experiences. It helps a lot.
Thank you for your post, you have managed to do what so many carers, in my opinion, are unable to do - and that’s not a criticism because it is incredibly hard tied up as it so often with overwhelming emotion -which is to view your situation with some objectivity and work out what realistically you can do, want to do or whatever. It inevitably brings criticism from some quarters as indeed do my own posts when I say carers do not have to continue this role for ever and a day, they can choose to but don’t have to. What your post clearly says to me is that you have given careful thought to what will work for everyone after trying to be all things to everyone, put plans into action and although I wouldn’t for one minute suggest life suddenly became easy for you, you would know that you have done the best you can by all. The reality is that is all anyone can do, the best you can. Jean1 writes with a similar honesty about her situation and her comment about considering care homes and its timing is a particularly significant point - it doesn’t mean you no longer care rather it is precisely because you do and understand you can no longer provide all your partner needs that you may pursue this route.
The bit that is often missing, again in my opinion, when carers write about how hard, relentless and difficult the caring role can become - all of which is true - is that it is seldom recognised how hard it can be for the person with Parkinson’s to live with the knowledge that at some point in the future he or she may be responsible for causing so much pain and anguish to people they care about and also to acknowledge they may not even be aware of this should it happen. He or she also has to accept that, unlike carers, the person with Parkinson’s does not have any choices, they have to follow the path it dictates. For me, a primary concern from very early on is not to be a burden on my family. I have put such steps as I am able to make it as easy for them as possible but am acutely aware that whatever I do may not be enough - and that is the toughest of all pills to swallow.
At the end of the day whether a carer or person with Parkinson’s there are no easy answers, no right or wrong ways nor, as I have written several times on the forum are their any winners. I do however think and have great respect for the honesty for people like yourself and Jean1 who are able to make tough and timely decisions. It is something I have always tried to do on the forum - my replies may not always be an easy read or say what people want to hear, but they have always been honest in so far as may be said with limited information. Ultimately we each have to decide how to live with Parkinson’s, and there as many ways to do that as there are people affected by Parkinson’s.
Hi we bought my dad an automatic dispenser. It’s for dementia patients it works by a timer & an alarm rings for medication time & opens. The chemist fill it for him. Bought it on line, it may help you.