Got to sleep until 4:30 today. Got up exhausted. Walking into Larry’s bedroom. He was half on the floor holding a plastic urinal in his hands. He was trying to put it down after using it. Fell halfway out of bed. Was sort of kneeling leaning against the bed. Had to pry the urinal out of his hands. He wouldn’t let go. Somehow he punched a hole in it. There was piss everywhere. Got him back on the bed with great effort. Took the urinal to the bathroom. Returned with a roll of paper towels to clean up. Mopped up all the wet. Will have to go back with a bucket of hot water with bleach and soap to get the dried pee up. Great way to start the day
When we got to the living room this morning I looked out the front door to see if the cat who has adopted me was on the porch. He was. Closed the door. Heard something from upstairs. No idea what it was. Not in the mood to find out. After I ate breakfast went up to clean up Larry’s bedroom. There was a juvenile starling in Larry’s bedroom. In the few seconds I had opened the front door the damn bird flew in. Pulled up the blind of one of the windows in Larry’s bedroom, took out the screen, opened the window from the top and tried to get the bird out. It flew down the hall. Went down the hall after it. Flew back to Larry’s bedroom and directly out the open window. Then I got to clean up pee and change his sheets. Prep the bathroom to get him cleaned up. Did the breakfast dishes. Took the trash out. Watered pots out in the garden. Now I sit for a moment before I start again.
Okay you win! Thought some of my days were bad, but you win. We just started using a condom catheter at night. Dr. ordered so it goes thru Medicare. Using just under a month now and so far great success!!! Tryi g the daytime ones, but John won't always leave that one alone. Still working on that.
We tried the external catheter but it kept coming off. Fletch is now at the stage where his bladder retention has resulted in a SupraPubicCatheter being inserted today. Don’t know if the retention is worse than the incontinence! I had to put Fletch into permanent care as I couldn’t manage him at home anymore. He is a big man and wouldn’t stay put. He still keeps trying to get up by himself and consequently falls over. I feel for you because I and all the others on this site are suffering with you. Hang in there but make sure you look after yourself and get a break every now and then. ❤️
Had to chuckle about your “smells like a man’s urinal” comment. When my husband had an accident that I felt could have been avoided I caught myself hollering “I don’t want this house smelling like I live in a port-o-let!” Lol
Sometimes I read these posts and I get such painful flashbacks. I feel for you, Jeff! (Although the starling was kind of funny, wasn't it?) The exhaustion is overwhelming. Oh the cleaning and the hoisting. The pee everywhere. The smashed furniture and plumbing and flooding. I don't know how we do it. But I wish I could do it again.
Yeah, I'm probably overstating my willingness to go back. Easy to say from here!. At the time, for like the last two years, I was so zombified I hardly knew up from down. I was a wreck, although faking it well enough not to panic the on-lookers. I just really miss my sweetheart.
But what would happen to him if you go first? That's not really a desirable scenario, is it? You do have to take care of yourself somehow - although I know how impossible that can be!
If I dropped dead he would be in a nursing home for the rest of his life. He would find out things would not happened on demand. He won’t like that at all. His cousin Diane would handle getting him placed. She’s our backup medical and legal POA.
I suppose you have already considered and dismissed the idea of having him move to a nursing home while you are alive? Many folks who do that say it saved their relationship, hard as it was to do.
We weren’t in any of the armed services so the VA is out. As you know the price of nursing homes can be staggering in the US. Big money for possible bad care.
Like you, easterncedar, the flashbacks from reading posts can be so painful I do sometimes wonder whether I'm taking backward steps instead of going forward. It's nearly 11 months since Rod lost the battle and to be honest the challenges of caring for him pale into insignificance compared to the pain of not having him here with me. Oh well, onwards and upwards is the best and only way to go.
The profound grief with the loss of a loved one isn’t remotely covered by anyone trying to explain it. The more intertwined your lives were the worse it is. I lost a much loved friend 25 years ago this coming Monday. Not a day has gone by that I don’t think about him. That grieving took a few years. It isn’t over quickly.
I guess many of us have discovered that the loneliness of grief is not easily solved. I have a good network of friends and family but I still feel like a stranger in a very strange world and can feel completely alone despite being in a room full of people. Nobody sees that because the brave face is all others see so the assumption is that I am doing really well. Such a great loss leaves a huge void in our lives, part of who we were has gone. I miss so much coming home and sharing the story of my day with Rod. I miss sitting in a companionable silence with him - the silence now is deafening. Everywhere I turn there's a trigger. Yes, grief is a very lonely road that we have to travel alone but somehow we manage to go on, though I can't explain how we do that - survival instinct maybe?
I feel your pain, I’m headed for a massage this morning when my husband’s caregiver arrives, got maybe 2 hours of sleep last night listening to him breathing, gasping, coughing....may need to move to another bedroom.☹️Taking each day at s time and thankful to see another day🙏🏾
Oh Jeff you are amazing!!! Sincerely hope you have managed to fit in a long nap. May you be bird free for a very long time and wishing you a breathing space from the endless mopping of wee!!
I became obsessed with antibacterial spray found two lovely fragrant ones mint or rhubarb!!!
Please look after yourself - you are a wonderful man.
As has already been said it bring back memories for so many of us. I can remember how utterly exhausted I was all the time, particularly towards the end.
I still think David decided to go whilst I was away because he was so aware of what he was putting me through 24 hours a day, and had apologised for it in the past.
Like he was doing it deliberately!
You have done and continue to to such a wonderful job for Larry.
With regards to the floor, and the clean up, are your floors carpet or some form of hard floor?
Our upstairs was carpeted, apart from the bathroom and I bought one of those domestic carpet cleaners that you fill with water and cleaning solution, so when David had an accident I could pretty quickly clean that chunk of carpet.
There are similar machines for hard floor. It might be worth looking at instead of getting down on your hands and knees and scrubbing ?
And to think earlier I was complaining about having to mow the yard, now I remember why getting out to mow was enjoyable. It was an hour I didn't have to worry about taking care of dad.
I still have the lawn to mow. It might happen tomorrow or Saturday when it is to be cooler. This year it rained a lot keeping the grass growing all summer. The only good thing about a drought it the grass goes dormant.
I think all of us on this path live by two words...tenacity and gratitude. Tenacity to get us through the day and gratitude that we got to do it for someone we love.
Never know what to expect anymore. Mike has started waking up, standing (with difficulty) scratching his head, getting back into bed, waking again 45 minutes later to go to bathroom
When I wake in the morning, see on floor around toilet didn't quite make it. I too get bleach cleaner and go to work.
Have learned like you to go with the flow.....no pun intended!!#
The grout around the second floor toilet is brown now. That’s when I moved him to plastic urinals everywhere in the house. So much easier to contain it then clean it up.
If you can be bothered or even more valid, if you have the time, a natural grout cleaner is,
7 cups water, 1/2 cup baking soda,1/3 cup lemon juice,1/4 cup vinegar
Put it into a spray bottle. Spray the area and leave it for about 5 minutes then scrub it. It worked wonders on my tiles, grout and smell plus it’s natural no chemicals.
On a serious note though, Chris had so many falls/accidents trying to pee at night, we started using a Conveen 24/7. It really did help, far fewer falls and less tooing and froing to the loo.
My husband Fletch was having bladder retention so Is having a permanent catheter put in through the stomach. Not very invasive but saving a lot of future problems.
I would appreciate it so much if you would tell me how that is working out. The doctor feels that is what my husband must have since the permanent catheter has been in for over a month and has caused big problems. Was it a big procedure, how was his reaction to the anesthetic, is it difficult to take care of and how is he reacting to having it in his stomach? I had never heard of this before so am anxious to hear from you.
My husband has had his for 5 weeks and now has a staph infection. It is due to be changed for the first time on Wednesday but not sure if they will do it now until it has cleared up. He hasn’t been bothered by the catheter and can sleep through the night peacefully now so that’s a blessing.
Thank you so much for your reply. I am so glad that it is working well for your husband, making life a little easier for both of you. I hope his staph infection has cleared up by now and he is doing better. I know how busy and hectic your life must be so I hate to even ask if you could please answer a few questions for me about this procedure. I had never heard of this before and don't have anyone else to ask. My questions are......was this procedure a simple one, did the anesthetic make his brain problem worse, is it simple to care for, is it uncomfortable for him? The doctor is not anxious to do this procedure on him because of the fact that he is 88 and also says the anesthetic will make his brain disease worse. He has had a permanent catheter for over a month, causing some big problems, has had fever for over two months and now the fever is getting higher (his normal is 97.6 and is now 101.2), so I don't know what to do. That is why I would really appreciate any information you could give me. xoxo
My husband has had his catheter now for 6 weeks. Had it changed for the first time today. It has to be changed every 6 weeks. He has not really had any problems apart from an infection at the site but antibiotics fixed that. I am told procedure is simple and can be done with a spinal anaesthetic if necessary but my husband had the general. It takes about 1/2 an hour I can’t say the general anaesthetic affected his brain but there again every one is different. It is certainly easier for him now not getting up in the middle of the night. The bags are easy to empty and a larger one is put on for night time. I hope this helps you. XX
Should I laugh, possibly not if there were people on here who did not understand the ups and downs of caring for someone with PSP. However as someone who has the same trials and tribulations as you have had this morning I did have a little giggle. Your day can hopefully get better 🤞🤞🤞
I meant to reply to you the other day but once I have read the message they seem to disappear. It would be lovely to meet up. When are you back to school?
You must think I’m avoiding you lol but Saturday I’m going to the farm with the grandkids and hopefully Craig will come - just got to see how wheelchair friendly it is I’m sure is all tarmaced and Sunday I’m in the garden with my friend drinking gin 😂😂. Next Saturday I’m at safari park again hopefully with Craig and kids- memories to be made 😢. I can try for Sunday 1st if that’s any good xx
Oh god, poor you, of course you must be exhausted, that sounds horrendous. Have you got any help, you need a break, who ever would imagine doing this at our age. Thinking of you. Hugs and xxx
Oh Jeff! It is so exhausting when you have to do everything. And I mean everything! There always seems to be one surprise right after the next and you just can’t make this stuff up. The only thing that could have been messier would have been to let the cat in to catch the bird. I love the way you verbalize your stories. I hope that your day improved and that tomorrow starts on a happier note. You’re an amazing caregiver!
I feel for you and know exactly what you're going through. My brother in law had me to help out as I only live afew metres away. My sister regularly fell out of bed and we used a waterproof sheet and incontinence pants which helped us out with washing. It's such a dreadful disease. I wouldn't wish it on anyone. Sending my love x
The thought of what’s to come fills me with dread . I’ve just had my hospital bed delivered,had my first night in it last night as hubby away. Had a friend on standby in case I had a fall as legs are becoming weaker despite the exercises. Think it’s going to get a bit of getting used to as it keeps inflating throughout the night, but having said that it was a good night.
Just feel so low about everything today, but off to the hospice day centre this afternoon ,that usually perks me up,massage as my neck gets very tight now,exercise bike, and singing group-ear plugs required!
My thoughts are with all you carers who have to live through this thing with us. Lots of hugs and thaknkyous while I can. Jayne xx
It helps that you know how demanding this is on the care giver. I don’t envy you having this disease it’s hard. Larry says he isn’t depressed but I doubt he is telling the truth. He went from independences to total dependence over the last 4.5 years.
One day, in the distant future, believe it or not you may laugh about all this. Or maybe it’s just mad me who can remember Colin standing by the bed in the night with the urine bottle upright on the floor and him aiming for the hole in the top with none of it going in. It did go in the drawer of the bedside cabinet though, in his slippers and the carpet. Now my memories are like watching You’ve been framed, watching and laughing at other’s misfortune. You also reminded me of the magpie in the bedroom. That does make me laugh as I called for help from a friend who always said if you need me just phone. I did but it was very clear when he arrived that he had a phobia about birds. I was laughing about that soon after he left....after the bird had flown out .
To get rid of the pee smell, after scrubbing I used a spray from the pet shop made to get rid of cat and dog pee, recommended by a carer and that worked. Our pee problems were improved once C got his convene. They were pulled off at first but once I told him I’d use Cellotape if he didn’t stop, things improved. I was joking but found out later that my friend did, on her husband with motor neurone disease 😱.
I hope you manage to get a rest at some time today.
😂 I threatened him with boxing gloves as well but never thought of a straight jacket. He would have laughed at that. He would have been 72 today. Had a bit of a wobble first thing but the sun makes most things better for me XxxX
Happy Birthday to Colin, Bev. Thankfully, I have another birthday to think of on Steve's birthday. My gorgeous little grandson. We will raise a glass to him later and of course to you.
Having a bit of a wobble myself at the moment. Never got around to sorting out the Sky TV, still in his name. Now I want to add something to it, I first have to contact the bereavement office. Thought that word had gone out of my vocabulary, feel really sick. I don't want to tell anyone else that Steve has gone, done that, got the tee-shirt. Why can't I just get on with my life and not have these constant reminders???? AND why is it that when you are feeling down about one thing, something else comes through the letterbox, just to rub it in. A letter from the Hospice!
I know you did exactly the same, so knew this day would come. It's just the surprise how raw everything still is, after nearly three years, despite my life moving forward.
The memories are so vivid aren't they Bev. Happy Birthday to Colin, he was a brave man. I remember when I first met him and he was very very ill, it was the stark truth of PSP that hit me that day but you were brilliant Bev, I learned a good few things from watching how you cared for him you wise old owl. I'll give you a call to arrange a meet up. Xxx
Ah thanks, not so sure about the old bit though😆. From one wise old owl to another wiser one, sorry I haven’t got your shoes back to you yet. I haven’t been to Brighton for weeks, festival time! You nearly lost them this week. My daughter in law from Suffolk took a fancy to them. She said you may forget you left them here. It’s OK, they are still safe and unworn. Speak to you soon XxxX
Oh Jeff poor you, it is just so hard and reading your post brought back memories. You are doing a great job and just try to stay positive and smile through the tough times. Thinking of you and hope you get a little bit of rest today
My goodness, look at all the responses. It is this type of post that unites us all in the PSP Caregiver Network! Just a week or two ago, when I went to bed ahead of Bob, I found a huge wet spot on my side. (He had apparently missed the incontinence pad when he napped earlier that afternoon.) Changing to the only other pair of sheets, I threw those into the wash. The next morning, I smelled cat urine. Bob had closed the door to the laundry room, which houses the litter box. Cat decided to pee on the bed. Second set of sheets ready for washing. Later that day, when the man came to give us an estimate on redoing our bathroom* and he went under the house, he found a swoosh of water when he removed the insulation. “I think that’s the laundry room ... are you doing wash?” Sure enough, I get upstairs to the laundry room and the washer discharge hose has disconnected from the wall and is flooding the laundry room. Second set of sheets still in the washer and fingers crossed he doesn’t wet the ones on the bed. 🙄
*just a week before, Bob couldn’t find the plunger [right under the sink across from the toilet] and so flooded the floor, requiring the removal of the vinyl flooring to dry out the underwood. Never a dull moment. 🥴
Larry’s cousin Diane and I do errands for me on Friday mornings. It’s also out mutual bitch session. I am just back from that. We vented for an hour and a half to each other.
Phew, made me tired just reading your post and made th memories come flooding back. Ben used a convene until the final weeks when his skin became more delicate and made a tremendous difference but some men just don't tolerate them it seems. All you can do is keep on keeping on, I don't know where that inner strength comes from but most of us do seem to have it. In the daytime Ben would be in his recliner chair and when he slept I would often lie on his bed to grab forty winks. It's a hard and lonely road caring for someone and sometimes you wonder if you can keep going but somehow you just do. Enjoy any moments of rest that you can and only do jobs that are really necessary, that's what I did as a survival mechanism.
Thanks for the laugh. You are an inspiration to me. All of you are. As I watch the slow steady decline of this damn disease in my wife, I wonder how I will handle it. And then I read your story today and all the wonderful comments and I know. Thanks to all and have a good weekend.
Your post made my day! We’ve all had days like this but would never be able to relay it in such an amusing way. It really made me laugh. When things get so frantic like that, I just have to stop and laugh. It’s better than crying. Keep showing us the funny side of caregiving. We need it.
(My husband has had two strokes and was diagnosed in November with PSP. I am 79 years old and his only caregiver.)
Oh how I feel your pain, Jeff. Steve didn't fall out of bed, but he did attempt to use the urinal while the lid was still on it and couldn't understand why he was all wet. I can't complain though, as he is mostly able to control his bladder and bowels. I know that will not continue and am bracing for it. I have taken to keeping a carpet cleaner ready at all times with a cleaning solution to deal with all the other spills. Two days in a row it's been a half full bottle of Boost that's been spilled on the living room carpet. He's pestered me to get new carpet and I admit to dragging my feet on the matter. Why bother? I had the hole in the wall (drywall) repaired from a bad fall that put him head first through it. One month later he fell in the same spot and smashed the repaired drywall, but at least this time it was his butt that went through it. I have not had it repaired. I should, but I'm half afraid to. I sound like I'm complaining; I guess I am, but I know as so many of you have said there will come a day when I will long for these days once again.
Oh Jeff, our day never stops does it!!! Every once in a while when I just have to sit down I will get a "you look tired, what's for dinner?"
Just gotta nod and keep on going...and hope the rest of the day is not too bad on both of us. I have to admit though your narratives, while so true and exactly accurate, do give me a much needed chuckle with your descriptions.
That’s my goal to see the absurdity of this disease. Everyday is unique. I never know what will happen or when. Needing to be alert constantly is exhausting more than the lack of sleep. I am happy when I get to sit still for half an hour.
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Roisin's return?
Dad is uncontrollable..too adamant
