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By Witsend On 2013.05.14 05:51
Hi everyone,
It's 2:30 am and my husband just asked me why I'm so mean to him. I did lose my temper because he woke me up to help him get off the floor, and you caregivers know what that can entail. When I asked him how he fell, he said he got down on the floor to stretch. This was the fourth fall in 24 hours and I've had 4 hours sleep in those 24 hours. I'm a tad tired and touchy. I wasn't kind and scolded him (that was all, just scolding) and now I'm getting "You have a real mean streak" and "why are you so mean?" After saying it's because I never get sleep, he said "Oh for God's sake go to a hotel." I have now gotten dressed and was heading out the door. I thought I would write here first. I can take a whole bunch of stuff, as we all can. My entire life has been devoted to this man - we have no children, I can't keep friends because I need to take care of him all the time (hey - maybe I have no friends because I'm so "mean"!).

I'm much younger than he is and I have active bleeding ulcers and high blood pressure that is not responding well to medication. Many times I pray that I'll die first just to get out of this situation. In all this rambling, I do have a question for everyone. Do you ever raise your voice to your loved one? Am I the only one who has difficulty being saint-like 24/7 on no sleep? Am I mean?

Thank you all for being here - you're a lifeline!

By Freespirit On 2013.05.14 08:32
Dearest Witsend

You are absolutely NOT ALONE!!! I too have times when I raise my voice at my husband. . . and times when I feel like I am being a nag. . . then afterwards I feel incredibly guilty about it because I know that he can't help what he is doing.

There is nothing worse than not getting enough sleep!!! It makes everything seem worse. And being a constant caregiver, it is the only thing that gives us the reserve that we need. I can so relate to your share here, and my heart goes out to you because I have been there.

I want to be a source of encouragement to you this morning. Is there any way that you could enlist the help of a friend or relative to come in a sit with your husband for awhile so that you could get some sleep?

I know that there are no easy answers for sure. For me, I have found that praying really helps me to chill out and God provides me with just the right amount of patience that I need at the moment.

I'll be thinking about you today.

By mylove On 2013.05.14 09:01
Some days we get pushed up to the very outer areas of our limits. Some days we get pushed beyond. Lack of sleep makes that exponentially worse. Remember that the grumpiness that comes with lack of sleep is a temporary state and not a personal failing.

We are coming off of several days where my hubs has had sleep issues - up and down every few hours. I unfortunately haven't learned how to sleep through that, so I'm running low on reserve myself, and I do get grouchy too. I don't have anything to give in the way of solutions other than to offer a long distance hug and say hang in there.

By lilflower On 2013.05.14 11:32
You are not alone. I think we all have been so tired because of lack of sleep that we can be short and a little grumpy with our husbands. But we know that they are not in control of what is happening to them. Take a deep breath ,tell him you love him and let go of the moment. He knows your not mean , he is upset with the disease and you are the only one he can take it out on. He doesn't mean to he does not have control. He is scared as are we not knowing what will happen to them next. I also have taken to prayer and it is very helpful. It is calming and comforting. I also have gotten my husband to join me in a morning prayer and a bedtime prayer. Now if I forget he will stop me from whatever I am doing and call me over to take his hand and say a prayer together. Also I never used to nap when he did, now when he lays down so do I and it has improved my stress levels and my exhaustion. We are all with you and understand what you are going through. Stay strong and know you are not alone.

By jcoff012 On 2013.05.14 14:00
Witsend, your name says it all...but, you are not alone. Sadly, we all understand sleep deprivation.

I agree, try to lie down or put your feet up at least, when he rests during the day. There is nothing in the house that needs to be done that cannot be done at another time, so take advantage of his down times. Your health is mor important than any chore...

As for harsh words, I think it comes with the territory. I look at it this way...if I make a conscious effort to say "I love you" MORE than the harshness brought on by stress, I figure that outweighs the temporary "meanness".

One thing we both do is stop doing something, anything, and smile, wink, or say "I love you." All day long...my favorite is to sneak up on him in the shower and tell him he's sexy.which brings on a massive smile..nice way to start his day...being appreciated.

On the days when harsh words prevail, I just have learned to walk away....not worth a fight...

By LOHENGR1N On 2013.05.14 16:14
This topic arises often as does harsh words from each side. Parkinson's is a prime sleep dennier to both Caregiver and patient. People and Medical professionals go round and round about how to handle it. As I posted on another thread the counsel of staying awake all day (no napping) doesn't work with this Disease be it the disease itself or side-effects of medication. Deprived of sleep both sides have shorter tempers. That is a fact and understandable We can snap at and bicker with each other. Patients who can have to try to understand our caregivers lacking sleep can be blunt but we also have to understand it is not only physical but emotionally draining on them. The other side of the coin is caregivers recognize the lack of sleep and restful sleep causes the same effects on patients. It is a large no win situation and finding solutions isn't easy and I don't have the answer. The only thing I can suggest is if at all possible take a nap when the patient is napping. Many, many times Caregivers reach their wits end trying to clean the house, do the dishes, do the laundry, do the shopping, pay the bills, read the mail, fix the meal, walk the dog, vacuum the floors, mop the floors, wash the windows etc, etc while the patient naps. No wonder you are beat! We sometimes especially earlier in the disease want to have the home and ourselves look nice and like nothing is wrong and no dust bunnies live here! Well Parkinson's Disease lives in the home and it is in time a 24/7 job to care for our loved one. Those not involved with living with P.D. fail to realize that, really We all know they can't realize that fully until they are in our places. And each place is different, each situation is different.

So I guess the only and best advice I can give is be easier on yourself. Try to nap when you can, we patients do and so should you caregivers! To rush around trying to do everything while we nap only frustrates you and makes one resentful many times. We patient and caregivers have Parkinson's Disease to deal with. Our lives have changed through no fault of our own. We need a clear head and rested as much as possible body to deal with activities of daily living much more than evicting dust bunnies. All you need do is have healthy and safe not spotless you're caring for your loved one and yourself. Be easier on yourself and nap when you can. Take care, best of luck and hang in there

By lurkingforacure On 2013.05.14 20:00
Don't beat yourself up too much. We've all done this and no doubt, in the stress we live with, will do it again. My husband does so well but even he cracks, and I do the best I can but I crack too. It sucks but we all are doing the best we can.

No doubt, sleep makes everything better and lack of sleep makes everything worse. For everyone....so, I would see what I could do to increase the chances that I could get some sleep.

Sadly, for most of us, that means sleeping in separate rooms, some use a baby monitor so they can hear if there is a problem, others hire nightime caregivers, if money allows. It depends on how functional your loved one is and that can change, as we all know.

I hope you can get more sleep soon, that will help coping skills so much.

By Witsend On 2013.05.14 23:28
Thank you all so much! I'm litera[ly crying with gratitude. Just knowing that there are wonderful, kind, and strong people out there like you who are walking this same path is incredibly comforting. This disease touches all parts of our lives including the spiritual part. I will make a commitment to pray first, and then react. Thank you again!

By olpilot On 2013.05.15 00:26
I sometimes snap at my wife in anger that I have no idea wherec it comes from. I get angry when I'm not mad about anything, I have no idea where it comes from. After a few minutes it's gone. I don't think I could put up with me......

By lilflower On 2013.05.15 08:30
Thank you for my first smile of the morning. You just put down in words exactly what my hubby says to me. But he also adds I don't think I could put up with me I thank God every day you are the strongest and most loving women and your all mine. We all need nice words to fill our hearts it make those difficult days a little less difficult.

By carman96 On 2013.05.15 08:51
Witsend you now know you are not alone and it is okay to have these feelings. I usually say I am at the end of my rope. I have days when I have little sleep and am very grouchy. Sometimes I snap at my husband. I can't nap in the daytime. Never could.
Is your husband a veteran? Sometimes they can help.
Sometimes at senior centers they have peer volunteers that can sit with your loved one while you rest or get out of the house. I haven't gone those routes yet since we have a friend who stays with us.
I took a sleeping pill last night so I could get a few hours sleep. This is not every night but sometimes I just gotta sleep! Just looked in on my husband and he's sleeping like a baby.
Last year I lost 60 pounds on weight watchers and I am off my blood pressure pills completely. My blood sugar and cholesterol are normal now. I go to an exercise class 3 days a week.
You must take care of yourself first and foremost or you are no good to anyone!
So hang in there and let us know how it is going.

By parkinit On 2013.05.15 23:56
Witsend you are DEFINITELY not alone. I snap when tired especially. I've learned to bite my tongue, but many times, I can't help but have my feelings hurt when in front of others, he says, "Will you just let me finished" . . . as he rambles on and on and on during meetings. SIGH.
YOU HAVE A SISTERHOOD HERE!! :)

By Betsey Clarke On 2013.05.23 00:40
I feel so blessed to have come upon this forum. I have had all the feelings of anger, fear, anxiety, lack of sleep, and many more for the last two years of taking care of my husband 24/7. He is confined to a wheelchair, and bed, and recently I cannot even get him into the car. Witsend, you are not alone, I guess there are many of us out there! When I get really crabby, I have to stop, breathe, go outside, and remind myself that he is totally helpless. When I started to cry (totally unlike me) because of feeling hopeless, my dr. suggested antidepressants. I had not even thought of it, and decided it was worth a try. I think they keep me from reaching the low lows. The other thing is that every single day, there are times when I think that I cannot do this, and need to move him to skilled nursing, and yet a few hours later, feel blessed that I still have him in my life, and that I am still able to give him quality care. Very confusing, till I realized that was probably normal!

By Trusting On 2013.05.23 23:17
My PWP told me tonight to not "holler" at him. He has hearing loss and it makes things even more difficult b/c I have to raise my voice for him to hear me. (I didn't holler at him). It's as though he gets confused and thinks I'm screaming at him when I'm not. I don't know if this is part of the brain deteriating or not. I think the loss of his thought process is the hardest thing I have to deal with. He was very smart but now he doesn't come across that way. I have to repeat myself over and over and after several times I get aggravated. Again, I don't know if it is hearing loss or Parkinsons...... Hang in there. This is a road we've never traveled.

By Freespirit On 2013.05.24 09:49
I just want to send out a huge THANK YOU to each and everyone who left comments here. I'm sitting here at work almost in tears. . . just from reading all of your experiences and knowing that I am not alone. It helps so much to know that I am not on an island, but that there are others out there such as yourselves, who are going through the very same thing.


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