Twenty minutes into nodding off for the night. I’m almost asleep when I get up to tuck my husband into bed. He falls asleep quickly and I finally doze off an hour later. I’m about two hours into a deep sleep now. I think I’m beginning to dream but I am awakened suddenly by my husband who says “Honey, can you help me?”. I’m quickly out of bed and next to his side (adrenaline rush). I ask what he needs help with and he says “I can’t open it”. Hum... “what is it that you cannot open?”. His eyes are glassy and I realize that he’s talking in his sleep. I think to myself that he’s just dreaming. It’s 3:00 in the morning. I have body aches from lack of sleep and my eyeballs feel like tiny piss holes in the snow. At this hour, do I reach for a glass of wine or do I have coffee? A glass of wine sounds good but it’s 3:00 in the morning! Which one of us is confused? Was he dreaming or hallucinating? Well... instead of reaching for a beverage I decide to cuddle. Try as I might to fall asleep as I’m holding my love his body starts in with the spasms and then the jerks. I hold him thinking this will calm him down and I’m trying to cherish this phase because I know there will come a time when I’ll miss his quirks. I’m fully awake now. It’s 4AM... Might as well watch the sun come up. Coffee it is... if only we had some doughnuts to go with it. I hope I can find time for a nap later. For now I will enjoy this thankful new day. Carry on...
Top of the morning to you : Twenty minutes... - PSP Association
Nothing like an adrenaline rush to wake up to. Done that any number of times. Hope you get an uninterrupted nap in at some point today.
That's a great share. Thank you!
Oh these sleepless nights are hard going. Sadly all part of the PSP journey, the concept of a good night”s sleep has a whole new meaning these days!!!
Hope you manage a little siesta - I take one whenever I can!!!
But even when they are gone sleep doesn’t come back unfortunately ☹️
Dear Cuttercat, I’m so sorry for your loss! Thank you for your wisdom. I hadn’t even thought about sleeping once he’s gone for real. It sounds even more painful than watching them struggle so hard just to get through a day. Something I’m really dreading and hoping I still have some years with him 😢
Love you SewBears! I could have easily written this! My experience is so often the same. May God grant us strength to hang in there as we have thus far.🙏💕
Loved your choice: When uncertain: cuddle!
There will come a time, as you say, when that won't be an option - and you'll be so glad you did when you could. Even when all speech and much cognition is gone...they know you are being a wife, not just a caregiver
You deserve many doughnuts...and good sleeps! XXX
I agree you should have lots of doughnuts. I enjoyed reading your post as I haven’t even been able to sleep in the same room as my husband as he has been in hospital since July, we were married in hospital on 22nd October and still haven’t had a night together. But the hospital have said I can stay over I am so excited as I will be staying the night tomorrow. It’s funny how life changes I am so excited about sleeping on a camp bed in a hospital room but to be able to wake up in the same room and share a first morning cup of tea will be lovely and I completely agree with what you say about cherishing these things while you still can. I hope you have a lovely day despite the tiredness
6,5 years ago, the PSP presented its first specific symptom on my wife.
Sleeping has always been a battlefield.
I will tell you our experience in case it is useful to someone:
1) Exercise 6 days a week:
Morning.-Passive exercises in bed or chair (Move all major muscles, speech therapy exercises and exercises of mouth and ocular muscles: 2 to 3 hours) and active exercises ((helped by 1 or 2 people: At least go up and down 50 steps (odd days), walk 200-300 meters (even days)).
Then she needs to rest at least 30 '.
Physical exercises can help sleep better and more regularly in bowel evacuation.
The tiredness of these activities can help fall asleep.
Afternoon: 2 hours 'siesta' and after a cultural activity and additionally a wheelchair walk for at least 1 hour. In our case it is important an pleasant cultural activity not exciting (avoiding activities or films unpleasant, violent, sad, stressful, etc.
Six and half years after the first symptom, she is still exercising, but it seems to be increasingly difficult for her. I encourage her strongly, but it is not easy to overcome her rejection, especially to walk as well as going up and down stairs.
2) Palliative medication against depression and insomnia. In our case right now: 1 Sertraline-50 at breakfast and 1 Lorazepan-1mg one hour before dinner. Of course all these drugs were prescribed by a doctor.
Some people include 3 to 6 mg of CBD Oil sunlingual before lunch.
3) Light suppers avoiding proteins as much as possible.
With all these we have achieved nights (22:00 p.m. to 8:00 a.m.) and naps (15:00 p.m. to 17:00 p.m.) more or less quiet.
4) Breakfasts with a little coffee or thé to combat morning drowsiness.
Hope to be usefull
Dear Luis, Thank you! I have heard exercise helps but I haven’t put it into action. I will give it a go. Thanks for reminding me/us to move our butts!!!
Luis, I enjoy how precisely you lay things out. Unfortunately , my husband can no longer move much.
Can you explain the reason you limit protein. I have been told to increase my husbands protein. Also, is there a problem with giving the CBD oil with a SSI class antidepressant.
It's just my experience that summarizes many other people's experiences from this chat applied by the "trial and error" system
It is empirical in my case. I do not know why but a dinner high in protein is discouraged by our physicians to make it easier to sleep.
In our case the dinner usually consists of some vegetable, a little (25g) of fish or alternatively an egg in tortilla and some fruit (eg a pear).
CDB Oil is another "trial and error" issue. If you are interested see:
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