Being a Parkinson’s carer is so hard

[dnac]

Feeling so fed up tonight. DH has Parkinson’s. I look after him as well as I can as well as working full
time. I accept this is the future for us now. DH has the hardest challenges now and ahead of him, I do realise that. But every now and then it all just seems so futile. I have recently been diagnosed with a relatively serious medical condition and had an appointment with the consultant to consider next steps today. When I came home from the appointment my DH made no reference to it and didn’t ask how it went. He hasn’t asked anything really about my condition at all. This evening he was obsessing over a speeding notice he received in the post today (when I was the one driving). I could tell when i walked through the door that something was really bothering him. It just made me feel selfish for wanting to explain my appointment. I know that I can get carers etc to help but the reality is that he is pretty much oblivious to anything that doesn’t involve him and gets incredibly wound up over what I think are not that important in the scheme of things. I can’t see that changing. Just how does anyone cope with this, with the focus and attention going all one way?

I’m so sorry, Thats does sound incredibly difficult. You can always come to MN avd talk about how you feel and there is usually someone around. And I’m sorry that you’ve had bad news about your own health.

I know it’s your DH rather than a parent but the Elderly Parent se ruin is quite busy, busier than this one anyway, and there are some knowledgable MNers in there. Have a look at the life limiting illness section too.

Im assuming that you have LPAs in place already and DH is seeing his Parkinson’s Nurse? Has he tried the Beechband yet? My relative with Parkinson’s has become more positive and more intéressâtes in others since they’ve started wearing theirs every day.

I hear you, OP.

My dad had Parkinson's and he also became very self-absorbed. He was not like that before. It's so confusing and frustrating.

Have you joined your local Parkinson's group? I know my parents used to find that helpful.

I also think counselling for you would be very helpful because you are facing a lot.

Thanks very much both for your replies. Another day, a bit of rest and on we go.

No, his response isn't because of Parkinson's, he is being a twat.

Any illness isn't a get out of jail free card where everything is excused.

I have spent a long time caring for a PWP, separating the two (being ill and being a twat) has been difficult, but we all realised that his behaviour could not be tolerated just because of his diagnosis.

You being unwell and concerned does matter, you are in a marriage and it is important for you both to still be a marriage not just his carer. Speak to him about how you feel, keep communicating. Also chat on here, talk about you not just him. It can really help.

How are you @dnac? How are you feeling after your appointment? Feel free to offload to us about that. Sending a hug 💐

Same boat here. I hate it, I am not important to anyone. Trying to get a break in May but it is more difficult to arrange care etc than it is worth to do it!

Are they willing to go into respite for a week or two @UncertainPerson?

Im in the same situation - we are both 61, DH diagnosed at 48, now in advanced Parkinson's with lewy body dementia. I still work full time (it's my respite!) It's so hard to see the person you love gradually disappearing. The person who has always been the one to share hard things with!
Like yours, @UncertainPerson , my DH is very self-obsessed now, and that's so hard - especially if you are unwell yourself 💐

Just tagging the OP who is @dnac x

Same here with DM. The selfishness nudged, then tipped into, cruelty. Don’t even ask about the lesser stuff like blowing hundreds of k. that wasn’t all hers to spend.

It does help when they go into a care home, but you need 6 months to rest before you can feel it.

She’s had it 20 years. We’ve got another decade of this.

After that, who knows what we’ll be left with as memories of our mother.

Could he be developing the dementia associated with Parkinson's? a common feature of dementia is this incredible self focus. What was he like emotionally beforehand? If it is it doesn't make it any easier to cope with but at least it is a reason.

Oh thank you - i got confused there!

My dad has dementia and parkinson’s and I’ll just say two words and leave it at that: Medical cannabis.

Op what stage is your dh at? We are dealing with this with MIL and it’s relentless and exhausting.