Where does the time go?

I cannot believe it has been such a long time since I wrote here and now know it is necessary to do so more regularly to stop the stress level rising.

Today, I have given myself a total rest day. I am still dispensing medication and keeping the other half fed and safe, but am not doing any sorting, lifting, cleaning or worrying.

I've been looking through family photo albums, reading and working on the family tree, as well as relaxing by stroking and brushing the cat. Thankfully, she enjoys both.

This has been a very deliberate decision today as things have become worse at home, medically and financially.

The latest medical news is that besides having PD and now showing definite signs of dementia, he has, what is believed to be, a fibrous dysplasia lesion growing in front of his brain. So far he's had two MRI scans and is to undergo a bone scan later this month to confirm the diagnosis and to determine the best method of treatment. They are positive that it is not the cause of any signs of dementia and/or confusion. He's still waiting to see a Neurologist at the same hospital, for the PD. Just to cap it all, his PSA levels are slightly elevated so there is to be yet another referral to ensure his prostate is OK. What next?

The only good news we've had is that his eyes are OK and the problems he's experienced are caused by a PD tremour and the slowness of signals getting through. His health is deteriorating noticeably and I have asked about the possibility of him attending a day care centre. He has also started showing signs of paranoia, which has led to me getting a few bruises but nothing too bad and nothing I cannot deal with.

Unfortunately, because of the dementia, I have had to give up work to care for him and ensure he takes the correct amount and type of medication at the right time. Unsurprisingly, this has had a drastic effect on our finances and the relevant authorities take forever processing claims for benefits.

The last time he stayed with his mother and sister, I had a massive clear out and tidy up, which left me feeling physically sick after discovering three credit cards, which I had no idea he had, plus a pile of scratch cards he had bought. It does explain a lot about the lack of money, which I couldn't understand.

I also managed to badly strain my back moving a bed and trying to clear some of his "towers". Whenever he tries to sort things and tidy up, he simply moves them around and builds towers, which have now completely blocked a room in the house. I still haven't unearthed my flute, but I'm sure I will and then I'll have another way to relax.

Thankfully, the very timely arrival of my very brave and beautiful daughter, who made me see the funnier side of things, plus the very loving hug she gave me, saved the day. She and her gorgeous brother make me the wealthiest person alive and just thinking of them fills my heart with pride and love, as well making me smile as broadly as I can.

More positives.....

I've met up with a very old friend and his new wife, who may be able to help me with some employment prospects that I can do mostly from home.

My parents have offered to help with some home improvements, which will make it much easier for us, and will help me financially.

My dearest friends treated us to an overnight trip to a botanical garden , which also, and unexpectedly, allowed us to spend a wonderful evening with mutual friends who used to live nearby. The sun shone and it was truly wonderful - I now have a houttuynia cordata chameleon with variegated leaves growing in my garden, as a wonderful souvenir and reminder of a lovely trip.

The sun shone yet again, when, with my parents, my children and my son's fiancée, I spent an amazing day on the River Thames aboard a Thames Barge. It has to be the best way to see some of London's finest sights and Tower Bridge had to open to let us through on both outward and inward journeys. It was a truly unforgettable day and I'd love to do it and other Thames Barge trips again.

Although my life at home is pretty grim, my husband does not and cannot care, worry or regret. I don't know if I want him to be able to do so as it would be too much for him. I am investigating ending our marriage, but still sharing the house with him and being his main carer.

Oh well, it's time to stop writing and start preparing dinner. I hope all who read this have people, pleasures and memories to make you smile and relax. I hope you have a lovely weekends and smile often.

3 Replies

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  • Wow...if you don't mind I shall pray for you. ~~Dennis

  • I have shared so many of your "adventures" and feelings. We have been married 47 years, the last 22 with PD. I must tell you that the neuro patch has been wonderful and given me a respite from some of the daunting events of dealing with my husband's adverse side effects.

    Wishing you well!

  • you're doing amazingly well . by the way is your husband on a dopamine agonist, such as requip or mirapex? I know from experience makes a person compulsive . And benadryl can definitely contribute to brain fog. wishing you well and sending my prayers too. the garden and river trips sound lovely.

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