First time here. My husband has had a Parkinson’s diagnosis for 5 years. (He is 62, so still relatively young)He is no longer mobile and I need to use a hoist to lift him. He needs this to enable him to use the commode. He has hallucinations and shows a number of signs of dementia. He is medicated but can have disturbed nights. He is demanding of me and is also extremely anxious much of the time. I’m feeling very much overwhelmed and stressed.
Hello, and welcome to the forum.
I’m a relative newbie - my diagnosis was last year and I’m at a fairly early stage in the progression of symptoms. I’ve already felt the warmth and support of this forum and I trust you will find something similar.
Your caring role must be a huge demand on you. I have enormous sympathy and respect for what you are going through.
I share in the caring of my sister who has MSA-C. Her rapid decline into disablement has been saddening and exhausting. Her condition is quite rare by comparison with PD and her treatment and drugs are unable to do anything but make her slightly less uncomfortable.
So I have some experience of living with and alongside a progressive, degenerative brain condition. Caring is such a massive job - both physically and emotionally demanding. Looking for support/companionship here is a good move I think.
Hello Toughacttofollow and welcome to the forum
I was sorry to read that you are having such a difficult time after such a relatively short time after your husband’s diagnosis. It would seem his decline has been quite rapid and severe if he already needs to be hoist transferred.
The caring role is not an easy one and it is no surprise to read that you are feeling overwhelmed and stressed given the circumstances you are trying to cope with. Since you have a hoist, I am assuming you have had input from the local occupational therapist (as opposed to your sorting this out yourself which not many would be likely to do) but I wondered how long ago this was. If it has been a while it may be worth asking for a review to see if there is anything they can offer which may help. I am thinking perhaps ways of giving you a break from your caring role maybe by your husband going to a day centre, or arranging regular respite. These sorts of things won’t resolve the difficulties you have but by having a regular break be it by your husband going to a day centre once or twice a week or a regular week’s respite every few months for example, can be enough to give you back some control and feel like you have a bit of your life back. Again I am assuming you know this and have probably already been down this route, but you are entitled to a Carer’s Assessment in your own right via your local council. If you haven’t done this I would strongly encourage you to consider this.
I also wondered if it is worth getting a review of his medication and general mental state. Medication is such a big part of managing Parkinson’s symptoms that where there are problems it is always worth getting this checked as quite a small change can make a big difference to both his physical and mental health.
I also think it would be worth your giving the helpline a call 0808 800 0303. Quite apart from the fact that you would probably find just being able to speak to someone openly about the difficulties you are facing and how you are feeling which in itself may make you feel a little better, they have access to a lot of resources and may be able to signpost you to some local support .
It’s not much but the above may help a little. If nothing else, the forum is a safe place if you need somewhere to let off steam - we may be limited in some ways as to what we can do, but we can be a sounding board, no-one will judge you and you can be as honest as you like. We all know living with Parkinson’s can be a hard road whether you have it or are involved in some capacity or other with someone who has, so please do not hesitate to return to the forum whenever you need.