I’m probably not alone. Husband diagnosed after 25 years of symptoms, and delayed by 2 years due to lockdowns. He is now on 5 daily doses of 150mg Madopar, incredibly forgetful, apathetic and sleepy, hallucinates, has false memories,starting balance problems, hates noise, crowds cant go out alone at all. PD and medication conflicts with Diabetes T1 and NHS does not do holistic approach. He seems to have dementia and verbal and comprehension problems. He has toddler tantrums increasingly when he imagines I apparently dont understand, or get angry or impatient. I try not to but he imagines things from the tiniest misunderstood move, expression or word. He’s red faced growling, stamping, hands out like claws. This behaviour now happens most days. I’m scared he’ll go for me and I will be hurt or killed. I cannot discuss this with GP or neurologist or PD nurse in front of him, and I have no idea if I could or should contact them behind his back. I know it is the PD but what can I do to care for him -and survive- when I dont know what he’ll do next?
I would strongly recommend that you contact your GP or your husband’s medical team as a matter of some urgency on your own behalf because quite clearly you need some help. I don’t wish to be dramatic here but it seems to me that your situation is at risk of breaking down and then you are into dealing with a crisis situation - and that is very stressful. However nobody can help if they are not up-to-date with what is happening.
You are also entitled to a carer’s assessment in your own right and you will need to contact your local council about this.
You might also want to try the helpline 0808 800 0303 who may be able to advise you further.
The Parkinson’s may be the root cause, but that doesn’t mean as your husband’s carer, you have to put up with the challenging behaviours he is presenting with on your own. Start banging on a few doors. Make a note of who you speak to and what they say, where possible confirm all phone calls with a follow-up email. My feeling is that your situation is potentially very complex and things may change quite quickly. It is worth having as full a record as you can manage as who said what and when easily gets confused.
You may feel this is going behind your husband’s back but it is about your health and well being as much as his so you have every right to take whatever steps you need to get help for both of you.
Let us know how you are getting on when you can.
Please take care, you are in a very difficult situation at the moment and I sincerely hope you get the support you need sooner rather than later.
Tot
Hi @Alisongs,
I see that you’ve already received some great advice from Tot regarding your concerns. I just wanted to intervene to let you know that I have sent you a private message with some information that you may appreciate. 
Best wishes,
Reah
Thank you both
Thank you very reassuring
Quick update. Now on 6mg Rivastigmine twice a day for dementia. Doesn’t help his memory LOL. He is calmer, can converse, does want to do things and go out, and beginning to remember to take his meds. Still unreasonable if he’s tremoring, got dyskinesias or drooling. I’m still knackered doing everything but still here
Hi Alisongs -
I’m new, caring for my wife. When the diagnosis came it was a tremendous shock to both of us. The full onset was so fast (about 15 months) it knocked us both flat. The “tantrums” for want of a better word frightened me, and I knew from previous experience that this was part of the illness, and that she would not remember them. After a few weeks on rivastigmine (about to go up to 3mg twice a day), the improvement is astounding, and we can both share a laugh about the strange actions. But I get impatient, and tired, angry with myself, with her, with life. But I cannot fault the help which has started pouring in. Nothing is easy, but admitting we need help to help sufferers of this illness is something I am allowing to sink in.
I joined the forum out of desperation - in 2 hours, it has filled me with hope.
BTW, I was never accused of being concise! I think Tot has already said it all.
suesbestmate
I am sorry to report that my husband has worsened. He has diabetes type 1 as well as Parkinsons and dementia. Rivastigmine has calmed him but since his insulin was changed last September he cannot work out his jab amounts or suitable low carb low protein meals and confuses daily nasty tremor episides with low sugar. He eats and jabs indiscriminately and then begs me to sort him out. He cannot remember to take his capsules nor what the alarms on his phone are for. He cannot find his tablets on the table in colour coded pots with on a sheet of paper with the day at the top and times down the side. Also tries to do DIY etc around the house and cannot remember what to do. Result being if I dash out for shopping, errands or meds, even if I get back within 2 hours, he messes something up and is angry, ill and shaking when I get back. High blood sugar or bad tremors overnight mean I get no sleep trying to help him. I can’t leave, there is no help. 111 and 999 and on call hospital diabetic nurse don’t come out at night. All the helplines point me elsewhere…Two weeks ago we waited 3 days for promised callbacks, doctor, district nurse. All only deal with one element. GP even told me dementia is what it is you have to get on with it… District nurse and social services said, leave him…111 finally sent ambulance on day 3, they also went round in circles for advice, help, or emergency placement. They got referred back to 111!!! I was dead on my feet and hysterical. They sent him to hospital, emergency safeguarding admission as abusing his meds…Had to nag nursing staff for two weeks for low protein as well as diabetic diet… They still don’t wait after meals to give his Madopar( they increased dose, which consultant had wanted to reduce. Still shaking violently when distressed… … Had to tell medical release social worker and mental health worker in front of husband the details of how he messes up and is volatile and threatening. Distressed us both as he doesn’t remember! They then left me to console him… I have refused at every turn to have anything to do with his jabs, meds and crises from now on. They’re now trying to find a suitable nursing home. Nowhere wants somebody that complicated… Please always remember it is illegal for anyone to compel you to look after somebody else… NHS and social services very good at emotional blackmail to get a chronically sick person off their hands and conscience without proper advice and help… Do not take your loved one home if you are supposed to cope alone 247 365 locked up at home together forever with resultant to risks of accidents and threats of violence. That’s domestic abuse. That’s illegal. If I agreed to bring my husband home, and I was sick or had an accident, we would both die. He no longer knows how to ring 999 or 111 or neighbours for help. He can’t come home. He’s only 67 and we cannot cope any more
Hello Alisongs
My heart went out to you when I read your post and I. / felt terribly sad for both of you but I absolutely respect and commend you for such a brave and honest post. People don’t have to agree with my views or replies although they are generally well received. My views that most commonly generate replies that I don’t understand etc are when I dare to suggest carers don’t have to do the caring role, that there is somehow a law that says a family member will always take on this role. There is no such law and no-one has to do it or carry the role indefinitely. People can choose to carry on but equally choose not to. That’s fact I have never suggested that these decisions are simple or easily made. I have never suggested that the system is perfect. I have never ignored the emotional cost to anybody involved. Yours is a very extreme case but the principles apply to anyone. I have Parkinson’s. I do not want my family to be my carers. I want them to be my family. I do not want them to be put in the position you are or indeed even in a less volatile situation, feel they have no choice but to take on the caring role - and do I not too have a choice about who helps me with the care I will undoubtedly need one day? I have done what I can to remove this responsibility from my family and make my views known. Will that be enough? I don’t know but maybe posts like yours will give some the courage to stand up and say no more. I do hope so. Too many carers and yes people with Parkinson’s struggle with care by informal carers which is not fit for purpose and it shouldn’t be so hard to change that so that you are not put in the position to flatly refuse to do it anymore. There should be a way for statutory services and informal carers to work better together then maybe decisions like yours won’t be such a battle if you should reach the end of the road.
Thank you for your post. I feel vindicated in my attempts to make people understand the caring role can be - and I believe should be - an active decision and one that is dynamic; and above anything else no-one has to take this role on just because they happen to be a family member.
I sincerely hope both you and your husband are successful in obtaining an appropriate solution to your complex situation and find some peace
Semt with my best wishes.
Tot
You have both been through terrible traumatic time. Living with type 1 diabetes and parkinsons is a double stressor for your husband and yourself. I understand both conditions. My sister has been type 1 for 50years. Her hypo attacks give her shakes, I can see how your husband will have problems working out which condition is causing which symptoms. As for diet, managing the cars in diabetes, then the protein for the parkinsons, that’s really hard work. Holistic care in the community just doesn’t seem to be there. Everything is compartmentalised, it’s supposed to be joined up, but in reality, as you have found, it’s not working. I’m tired of chasing up all the various bodies to try and get the assistance I need. I care for my husband, but have recently become unwell myself. I have been in tears on the phone a lot recently, worrying about myself, worrying about my husband,… One nurse said’your very emotional… You should get your thyroid levels checked’. That was her response to my distress. It’s made me think very deeply about both our ongoing care needs. I want assistance to look after myself or my husband at home. Eventually I outright asked for an OT assessment, but I had to get very emotional to be granted that! That’s not what community care was supposed to be about. Unless you get in a state of distress, like you described, you are left to get on with it. You have done the right thing and I do hope your husband eventually is provided with an appropriate care package. You need to protect your own mental health, to allow you to give emotional support to him as his life changes moving forward. I expect no one to be forced to look after me, but I will fight for my independence as much as possible. My very best wishes for you both. Your post made me very emotional… I don’t think that’s abnormal, we all just want people to show a level of understanding, and offer help.
Thanks for all the suggestions. Husband has now been 7 weeks in hospital waiting nursing home place. We cannot afford to keep a large 4 bedroom house going and pay for a nursing home and drain our savings and income. Noone has a clue what I’d do then! Far too much for me to deal with mentally and emotionally . So we have decided he will come home with continued NHS care for diabetes jabs and Parkinsons meds (he has been declared to have no capacity for medical matter, cannot keep himself alive). Hospital has done nothing in the last several weeks to adjust his regime for nursing home or home care after they suggested fewer and different jabs and Cobeneldopa patches in week 2. Not addressed excess saliva at all. Daily 2 hour long tremors, weakness and dyskinesia addressed last week by Parkinsons nurse, who said she was adding a small extra dose in the morning. He’s much more coherent in the evening, but his mornings are far worse! Turns out he’s getting extra Madopar 5x day! Overdose territory! 812 5mg per day with 800mg max suggested per day…He has a specific meal plan to avoid or cushion the effect of protein, but he still gets offered and given whatever he wants. Mealtimes vary but he’s given the Madopar at strict times even within 5 minutes of a meal… Hes left to himself for hygiene, except they nah him to do a full change of clothes every day. There is no stimulation, no TV or radio possible in a crowded busy ward, the fobbing off response to anything staff can’t do or are too busy for is “I’ll come and see you in a bit” and they don’t / can’t. He’s got dementia he doesn’t understand!!! Now waiting for interim nursing home place where his medical regime will be adjusted so he can come home on NHS continuing care. No timescales so I’m still spending 3 hours most days travelling to and fro to entertain, stimulate and tidy him up. That takes a couple of hours. His belongings disappear even so. So I go shopping for toiletries, a daily roll of kitchen paper to wipe saliva (tissues disintegrate) newspapers, books, diabetic sweets, replacing lost flannels, shirts, shoes, phone… It’s a full time job having him in hospital, and no idea where or when the interim nursing home will be. Anywhere in a large, mostly rural county, apparently. I don’t want him home because I know he’ll get worse, but I can do better than the hospital for him, and district nurse support will enable me to leave him briefly unattended if nurse is due to visit. And we can sort out house and garage, wills, lasting powers of attorney, sell up and move somewhere easier. And get him to the dentist for a broken tooth and the barbers for a haircut. And wrest my autonomy back from the random whims of the hospital
Hello again I really do wish there was something I could say or suggest you do that will give you some hope in an impossible situation for both you and your husband. Hospital, or at least the ward he is on, is clearly not the right place for him and I can only hope that a resolution is found soon. You must be absolutely exhausted quite apart from anything else you must be feeling. You have been very much in my thoughts. We here on the forum, cannot do much but we can be there for you if that helps. Please take care of yourself - you matter as much as your husband.
Tot