So ... even though I have tried to find joy every day, reality of this disease has punched me in the face. This has been a tough 3 or 4 days for me personally, with sleeping in 3 hour intervals, and Mom waking up to pee —- I find myself thinking at 3 am .. how is it possible to pee so much through the night??? Night before last, she woke up 4 times to pee, and 1 of the 4 was a false alarm. Exhausted.
I hit a wall a few days back, and my family had to catch me ... meltdown happened.... it’s burnout I believe.
I choose to sleep with Mom (since June)... I’m afraid she will fall, although I think we are past her getting up on her own ... she now struggles to sit upright without help.
I’ve been looking at a twin adjustable bed, and removing the queen ... adding a separate twin for me (if that all makes any sense) ... so I’m not physically in bed with her. On average, I wake up to her whispering my name every 2-3 hours through the night ... bedside commode is convenient, but still ...
Through the day, the responsibility has brought me to the place I feel trapped and life has changed so much for me. The lack of support from a large family, that doesn’t have a clue about caretaking, because none of us have ever had to do this ... has really played on my heart and soul. I don’t like the way I feel toward all of them.
My husband is amazing, he has really sacrificed - more than my three brothers (that all live relatively close - 2 of the 3 live within 5 miles of our home) 😟
So ... my husband is sending me, and my two adult children away on a vaca Monday - Saturday —- He has lined up my best friend to stay and care for Mom, and hired assistance to come in while I am gone ....I’m going to recharge my batteries.
I appreciate all of you. This forum has caused me to realize how short life is ... on top of my burnout, experiencing the loss the last few weeks that some of you have faced... makes all of this that is happening very real. I may not personally know any of you, but I have prayed for many of you the last few weeks, and have prayed you find comfort and peace through your grieving.
Off I go ... time to recharge. Leaving my Mom for these days is the toughest part. XOxoxox
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bazooka111
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We all need a break at times. Caring for someone 24/7 is a sure way to get burn-out eventually. Enjoy your break.
Ron
The job is relentless. You need to take a break. The hospice I used said I could have one ever 90 days.
I don’t think sleeping in the same room with her is good for you. In the same bed is a definite no no. You need to get your rest.
I did a baby monitor. I could hear Larry when he called me. We are all in a hyper alert state while doing this job. You won’t miss a call.
I would also do either pull up disposable underwear or diapers on her. Let her pee into those. Larry wore them.
If he called me and he and the bed were soaked I would change him then put a bath towel down over the wet bed spot with a disposable plastic backed absorbent pad over the towel. He wouldn’t be on a wet bed the rest of the night.
As for your brothers you may be the only daughter but there is no law that says you do all the tending to your mother. Tell them they either show up or monies will be needed to hire help.
This can go on for a few more years as your mother seems to be in pretty good shape. Your husband is going to have to have a lot of patients. You will need time together alone without worrying about your mother.
I agree. Sadly, I don't even sleep in the same room with my husband anymore and we shared a bed for 37 years. Occasionally I will sleep in the twin bed in his room but I get a good night's rest by myself in the other room. He has a call button that I hear instantly if he needs me and I can get to him within a minute or two. And if he wakes up in the night and wants to turn on the TV, he is free to do so. Be careful, Bazooka. Be good to yourself.
And I also agree with Jeff on the Depends. Getting up to go to the bathroom in the night is a fall risk as well as turning on the lights wakes both of you up so you probably can't get right back to sleep. A catheter is also an option. Takes a lot of stress and work out of the situation.
Dearest Kim, you are a wonderful daughter to your Mum and you have proved it yet again to us all. Taking a break from the caring role, is the best thing you will ever do. Your Mum needs you fit and well and 24/7 caring does not allow that. If your family will not take any if the responsibility, then I am afraid, it's time to get help in. Nobody can do this alone, not even you!!!
I agree whole hearted with Jeff, you should not be sleeping with your Mum, you have a husband that needs you as well. There are lots of monitors on the market, buy one. Also, perhaps it is time to think about pads for your Mum, I know that sounds terrible, it was a fight I fought, tooth and nail. Hindsight has showed me to be a complete fool, it is a battle you won't win, so give in NOW, it will give you so much more peace, it's safer for your Mum, no getting out of bed, therefore you will have more rest, therefore be a better carer. We all know the tiredness you are going through, believe me, this is a huge part and one that can be dealt with, to a certain degree. Mine and Steve 's life were transformed, once he had a catheter fitted.
Kim, we all hit that wall at some stage, unfortunately it won't be the only time. It's up to you to get the help you need in looking after your Mum. Remember, you are her daughter, without help, you will turn into a very tired grumpy, resentful carer. I promise you, it's not a good place to be in, for you and especially your Mum.
Enjoy your few days away, get the rest you need, most of all.:-
Kim, I not sure you can feel it, but I can assure you, everybody here is in a huge group hug, with you in the middle. Just promise us one thing, do NOT open this site, even for one moment, whilst you are away. (Unless you really need to talk to us) forget about PSP for a few precious days. It will find you soon enough. Try not to phone to ask after your Mum, they will soon find you, if you are needed.
I agree, Anne. Our lives were changed too once Sandy got a catheter. He had been getting up numerous times in the night and had fallen many times. Every time he moved to get up, I would wake up too, afraid for his safety. Looking back, it was awful and very dangerous.
Sending love and hugs, have a recharge and get some help it's a very demanding job, I had some help from carers four times a day, then did most of the nights on my own, with help from my daughter and husband, I couldn't have done it without them, it was full on, like you up and down all night, just nipping to shower and dress when help arrived in the morning, it's so unfair, your doing a great job, just take some you time, then have a rethink how you can make life easier for yourself and your mum. I couldn't have survived without the hoist, the pull up pants, the kylie sheets, I had mum's nighties shortened so she wasn't sitting on them, so changing was easier. Enjoy your break your best friends sounds like a wonderful friend xx
Kim, you have created wonderful memories during a time that your mom could fully appreciate and enjoy them. They even helped me.
My son...... I remember..... following the getting up to pee lots and lots during the night, and my son filling 2-3 plastic urinals, came his loss of control. The first time he wet the bed he was sooooo mortified.
Things don't get better. They just desensitize/numb you like the lobster in cold water who doesn't realize the heat is being turned up....until too late.
I am glad you came to this site early for you have been made aware of the PROGRESSIVE reality of this disease called PSP. I agree with Jeff166. It's time to move out the same bed.
If you want to keep your mom at home with you and you can afford it, I would suggest that you hire close to 18 hour care there at your home. Of the 24 hours in a day, pick the best 6 hours FOR YOU to be without help (10am-4pm???). Hire help for the other.
This disease takes its toll and often affects the caretakers health. Each time a new plateau arrives, PLEASE give yourself permission to evaluate what would be best for YOU and your MOM, and then go from there. Do not lock yourself into a RIGID decision of forever.
Enjoy your recharging. I hope you come home with a plan of where to go from here. The USA does NOT have the universal health care nor support ( which I think is benevolent) that many other countries such as the UK, Canada, etc, have.
As I have shared. I learned from my mom's health problems and I bought Long Term Care insurance back in 2002. I pay about $185 a month. I am grateful that I have not had to use it. I bought it because after my care-taking experiences I do NOT want any of MY family going through that with me. I am happy to pay what I pay and interpret it as a gift to not have to use it.
Thank you for letting me, us, know why you will disappear for a while.
Kim, I agree completely with Jeff and Anne (And the others) - You can't sustain the pace of care you've set for yourself without exploding (or imploding!) - and your husband deserves his wife back. They lived through it to the bitter end and they know! Listen to them.
And good for you (and your wonderful hubby!-) for taking that respite break now.
Bazooka, I have read your posts and know that you have been pouring everything into caring for your mum. You must take care of yourself. Don't spend all your energy on caregiving now, you need to conserve it for the long haul. Have a wonderful time on this trip. You will be back with your mum before you know it.
I remember fighting this battle a few months ago. Ian opted for a nighttime nappy which now affords us both a reasonable night's sleep most of the time.
As far as sitting up goes, we now have a twin adjustable bed which has been the best purchase we have made, as he is able to sit up and get out of bed without me breaking my back! But he is my husband, so I am happy to sleep beside him all night...at the moment, anyway! Your dear man is a star. I'm sure he needs time with you, too. Perhaps next time you could sneak a couple of days away with him!
Sleep well and deep during this break. Im sure you will be greatly restored and will return with loads of new strategies in mind.
Big hugs, Juliet x
You do an amazing job looking after your mum but you need to be fit and strong in body and mind.
I know precisely how you feel. Enjoy your break and try to seperate yourself mentally from caring for her, Do not phone to find out how she is. If you are worrying about your Mom you will not get the full benefit of your break. There should be no guilt. Sending you hugs.
You need to have regular breaks in order to be able to cope. When John was home I used to put him in both a pad and pull ups but he was always wet in the mornings despite being up an average of six times a night. Don’t know where it all came from. Even now he is in a nursing home they do not recommend a catheter which I know would have helped. Have you thought about a hospital bed where the sides can be put up to keep her safe. Make sure you enjoy your break. I had no family help at all and even now my two stepdaughters visit on average once every six to eight weeks and two weeks ago they came together and managed two hours which isa first. You have been amazing in how your care for your mother xx
You definitely deserve a break, you do so much for your Mum and you will come back and be a better carer & wife. I got myself in a similar position a couple of years ago & felt I couldn't take a break until the manager at my Mum's sheltered housing asked for a chat & told me I needed to look after myself to take care of Mum. Getting a few days break was hard but I came back able to think more objectively, make better decisions & be a nicer, kinder person. Now I try & give myself a day off a week, rather than a few days away, as it's just easier to manage, it makes a huge difference.
Night time peeing was a real issue with Mum & the accompanying falls, now she is on Trospium for overactive bladder which has helped and wears pads, plus waterproof mattress cover & Kylie washable absorbant sheet in case of accidents. It took some persuading & getting used to for her poor love but now she accepts it as the norm, has she had to accept so many other things with this horrible condition.
Have a lovely break & give that hubby of yours a big hug for being such a great guy. I have one too, he doesn't look for the limelight but he is key to me being able to look after Mum. We are very lucky
As someone with PSP I just wanted you to know that you have been a good daughter and have made great memories for you and your mom ❤️
Now it is your turn to forget the guilt and go away and enjoy the time with your family and hubby. Listen to everyone advice since they have been there.
Oh Kim, I can relate to the situation you are in. I was there and reached burnout. Not a nice place to be. Luckily, it was spotted by others and carers were brought in and occasional respite breaks arranged. This allowed me to keep my Dear Wife at home to the end. Something she so desperately wanted. Take care of yourself so you can take care of your Mum. You have been an amazing daughter and carer, that is evident in your Mums smile. Sending big hugs to you and your family. Have a good rest and come back ready for the next phase. Love conquers all. 🙏🙏💝💝💕💕
Wonderful, practical and sage advice by all the respondents. Take care of yourself... first. And as Ann says - Ditch the guilt. Kim, do what you need to do first for yourself.
Dear Kim, agree with much of what has been said. I just wish you were going on vacation with your husband; sounds as though he could use a change of scene and schedule, too.
What I am going to say next might sound "cold," but it is the outcome of months of prayer and reflection and a lifetime of faith. We are all mortal and know that our lives will end at some point, usually not at a time and in a manner of our choosing. Your mother -- and my husband-- are afflicted with conditions that will probably claim their lives much sooner than any of us want. I do what I can as a caregiver for my husband every day and love him even more than I did when he was well, but I do understand that there will come a day when his body will no longer sustain him and he will pass. I pray that I am with him when that happens, but I may not be. I pray that it is gentle and peaceful, but it may not be. There are limits to what I can control for him and I have to accept that. Being with him 24-7 won't guarantee him a perfect end-of-life or a perfect leaving of this world. You are doing so much for your mother but I am sure, from what you have shared about her, that she does not want you to deplete yourself entirely and lose the joys of life which she has long wished for you. A friend of mine, who was a professional counselor, used to say to some patients, "You can only give from your abundance." You can't give away what you don't have, and self care helps to keep your "inventory " high. Vacations help, yes, with keeping you well and "abundant," but so do normal, enriching relationships like those with your husband, friends, children and others and they are part of your energy system, too.
Take care of yourself and hang in there. Your mom and my wife are in a similar place in the progression and it is relentless and really starting to take its toll. On both of us. I just keep telling my self it is way too early in the process for me to wimp out and so far that is sustaining me. But I am lying if I tell you I am notterrified by what is to come.
Enjoy your much needed break. Once you get yourself recharged and feel like “you” again, and not just Mom’s caregiver, you will wonder why you didn’t take a break sooner.
As for the rest of the family not helping, have you point-blank asked your brothers? They may be thinking that you’re handling everything just fine and don’t need their assistance. They may be afraid that they don’t know what they’re doing (did any of us when we started on this journey?) or be able to do it like you can. You won’t know until you ask. And if they are still reluctant to be there in the trenches, they can help in other ways. Pick up Mom’s meds. Run errands. Bring you take out so you don’t have to cook for a night. There’s all kinds of ways to help.
And I agree with the others. Your hubby is a keeper! You have been blessed.
You've gotten plenty of great advice here. Have a great few days away! You've certainly earned it.
I would like to add that you MUST find a way to have regular breaks for the long haul. It is time to start getting that in place when you get back and are rested and have the energy. Don't wait until you are tired and desperate to do it. You and your husband both need to have a life too.
Get a nourishing break. It will be a long haul. My husband and I still going after diagnosis in 2008. I put tabby on him at night and cut a insert in half. So then I can just pull out the part that is wet and reinsert a 1/2 insert and not wake him. I do this once a night. He is as wet in the early morning and I reinsert the other half. No bed sores. Works good.
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