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By lurkingforacure On 2012.12.23 09:16
Does anyone's loved one have a crappy attitude? How do you deal with that? My husband has gotten so bad lately, the more I try to help, the worse things seem to get, it's so frustrating.

I do every thing in our family, so that ALL he has to do is take his meds, exercise, sit in the sun whenever he wants, and play on the keyboard which is good for dexterity. I don't resent this, it's just the way it is and I am trying to reduce the stress as much as possible. Yet if I do not actually go exercise with him, he has started to not go. Or if he goes, it is literally for ten or fifteen minutes. I bought him the PD DVD years ago: he has never watched it, much less done it. He has a very nice bike: has not ridden it in some time. We have an exercise machine, has not gotten on it in months. I have tried to explain to him several times that there are just some things I cannot actually do for him, and exercise is one of them. He knows this, but doesn't change. What do you do?

Attitude is another. The other day he told me that he had had a pretty crappy life, now that he's gotten to thinking about it all. I was so glad our kids were not present. I got really upset and told him I could not handle his attitude and left the room. I wonder if he is acting like this on purpose to push me away? I'm usually pretty optimistic and can forge through the tough stuff but I am finding this difficult. Right now he's told me how lousy he feels this morning but won't exercise and is eating yet another something or other in the kitchen. Just this morning I found a cereal bowl on our vanity and incredibly, another one on the kitchen counter, both half full of milk with cereal remnants floating around in them. We are getting bugs because of the constant night eating with dishes and food left out all the time.

My temper is getting short and I am starting to snap at our kids. I can't help but think my husband could help with some things, what is realistic? Can he not put his dirty socks and underwear in the hamper, or tshirts? Does PD make it impossible to empty a dirty dish in the sink and put it in the dishwasher? He can haul an iron chair around on the patio so that when he sits in it, it faces the sun, so why can't he pick up his dirty clothes and help out even a little?

By chroop67 On 2012.12.23 12:34
My mom's attitude is similar. It is so out of character, she has endured much in her life and always been a positive person. Not anymore. I think that part of it is a genuine sadness at what the disease has taken away but i truly believe that the disease and meds have altered her outlook on life. She is in a care home and they have great physio on site. They have been awesome about encouraging her to attend and even altering her physio plan to accommodate her but to no avail. She never goes and has an excuse every time they come to get her. I firmly believe that this disease robs its victims of the ability to reason and no amount of reasoning with the PD'er will change their attitude. For me it is so frustrating as I can't even comfort mom when she is upset because she refutes everything I say. Somedays I feel like throwing it in the towel but because we love them we will keep trying.

By parkinit On 2012.12.23 22:47
This is a disease of the brain, which in many cases affects not only motor skills but every facet of the person - emotions, thinking, motivation, memory, etc.

I believe it has been mentioned many times that apathy is a huge part of the disease and something we must deal with as caregivers. My spouse was peeing in a hand held urinal jug and would just leave it setting on the nightstand next to his bed.

I finally told him it would be very helpful if he could also empty it after using it. He made an effort for several days to do this, and it DID help immensely my mood as I was feeling like a maid, following him around dumping his urine for him. He is forgetting again. His memory really is lacking lately to put it lightly. These things appear to come and go and no medicine changes have been made.

Do you ask your PWP to help? I think it makes them feel useful if they are needed, but sometimes - let's blame it on the PD - they don't know what they can do to help. Reminders may be necessary as well.

When it is a mind-altering disease, personalities change. The person we knew X years ago may not be the person we now know - in more ways than one. However, I did marry for better or worse, and this is the worse that I hoped I wouldn't have to deal with, but will.

Yes, we all have those snackers. I have glasses, bowls, dishes that have to constantly be picked up in addition to cleaning up the many spills off the floor. It's just part of my daily life now and I have lamented in the past, but I'm just trying to buckle down . . . today.

By cmonge On 2012.12.24 13:09
My husband does not exercise at all, won't eat healthy and refuses to do anything that will help with his PD unless it has to do with his sexual performance and quite frankly I am totally not interested in that with him anymore because of his attitude. He has no empathy for my needs or feelings whatsoever. I just go day to day and have accepted that this is my life now. If it were not for my friends and my daughter, I would have lost it a long time ago.

By mytngenes On 2013.01.01 13:42
I can say "ditto" to everything that's been said in this thread. And I also confess that I am close to "losing it", hanging on by a thread. I've always been a very patient, positive person but night-after-night with very little sleep, working full time away from home and the stress of everything said here is being to be too much to endure. But what's the answer? Is there one? I too am here til death do us part and I love my husband dearly, but...it's becoming more difficult to deal with all these issues and his lack of understanding/concern for me. It's all about him.

By cmonge On 2013.01.01 15:23
I am so sympathetic to you. I ended the year by not speaking to him because he had one of his tantrums because he did not get his way. I am tired of it always being about him. He went to bed pounting and stayed there till noon today. I feel guilty but really I am just done and over it. I have a lot of male friends who give me the support and appreciation I need (not in a sexual way) but they appreciate the woman I am and what I go through and validate me which makes everything a little more bearable. I feel guilty turning to them but my therapist assure me I need this since I get no empathy anymore from my husband. Thank God for all my friends, family, faith and support that people have given me. If there was an out clause to the "till death do us part" or "in sickness and in health" that I could live with or if I could financially do it alone, I might consider it using it. But I am Catholic and truthfully I love the man I married. He may not be there anymore but I know if he could be he would so I see no alternative that I can live with.

By LOHENGR1N On 2013.01.01 16:21
Okie dokie, I realize much of this thread is venting and I've stayed out of it and just read along, however some questions have been asked so I'll try to give a "different" perspective. Please don't get me wrong I'm not pointing any fingers at anyone caregiver/partner or patient. I don't have the answers all I have is a different perspective to look at some issues. If there are answers or assistance any can find in this post....well then it's a bonus!

We know or it is beginning to dawn on many this disease sucks for all involved! It is so hard in the beginning and lets face it all through this disease for Caregivers not to take over doing things for Us patients. You see us struggle doing simple automatic tasks we once did quickly and flawlessly. You want to help, you want to make life easier for us. You take over task after task. Making life easier, forgetting ..well that's not really the right word maybe overlooking fits better...even denying could fit but whatever Parkinson's Disease is PROGRESSIVE so whatever you're taking over now will continue and the list will grow. Don't rush to be of help in the beginning and throughout the course of it. Sadly in time you'll be doing more and more try to refrain taking over tasks too soon. We might resent it and start to doubt our place and worth and in time you'll resent it and us and start to doubt your own ability and our love and feelings for You.

Attitude is a tricky beast. Even our own attitude can cloud our perspective of someone else's. We feel crappy most of the time as this disease progresses. It's hard to move and sometimes hurts to more and hurts to not move lol, (sorry some of my twisted humor sneaking out). When We hurt or are exhausted (which is most of the time) the last thing we may want to hear is go to exercise classes. We know you're trying to help us and want to give us the best tools to fight on with...but we're exhausted in fact we're too exhausted to argue that fact so we might keep quiet which can be interpreted as apathy toward you. Not what is happening but being unable to muster enough strength to our voice for a good argument (sometimes described as a discussion) Then we don't even care anymore. Well you get the idea it's misread as a We don't care and a you're nagging and nit pickin stand off. As I said it's a tough awful disease that not only shakes patients up but can shake whole families to their very foundations. And sadly sometimes apart.

No it is not unreasonable to expect us to pick up after ourselves. Yes sometimes (many times) reminders are needed. Many times I tend to think outside conventional lines. I view the process of dementia or loss of executive decision function as unlearning. We learned by rote or repetitive instruction. A is for apple etc,etc. now there is a glitch a loosing of this ability. Repeating over and over doesn't sink in. It is exasperating, it can drive us nuts but it isn't going to work, it just isn't. I don't know what to do or say to make this aspect any easier. However I might have a suggestion to help clothes laying around on the floor. I don't know if it will help (you who are in this situation can judge if it will good if not ..well what do I know anyway). Clothes laying around maybe a chair to toss them on we can easily pick them off one without stooping over risking face planting ourself into the floor or getting a stumbling start at head butting the doorway. Something we've done, will do, or has crossed our minds in a moment of panic trying to steady ourselves while retrieving objects from the floor.

This is getting lengthy it's time for my med's, typos are starting to multiply, it's time to end this. As i said in the beginning I know this thread is more of a vent, but questions arose and I tried to give a voice as to what might be some of the dynamics involved. I'm not finger pointing or trying to ruffle any feathers anywhere, just trying to help along this awful journey we're all on if I did good, if I didn't well I guess it was therapeutic atleast for me. We're all in this together, take care, best of luck and hang in there.

By jcoff012 On 2013.01.01 22:13
I didn't respond for a few days either, Al. I don't want to be condescending, either, but I simply do not feel the same way about PD and my role as a caregiver as some on this board.

I hope this isn't too graphic, but after my second of three cancer surgeries, my husband, knowing how much the intravenous needles hurt the backs of my hands, would help me out of bed, cradling my hands to his side, then help me into the bathroom. He would then hold my hands as I went to the bathroom, then clean me and help me back into bed..for the five days til I was released. For the next two months, he cooked, cleaned, did all the housework, and came home from work each day to make me lunch...never a complaint, always tender..

How can I not do the same for him? I will.

Does he get on my nerves? Of course. I remember asking Al if being a jerk was part of a PWP's makeup. Came from a particularly bad night.

But, again, I accept that this isn't the life we planned, and yet "it is what it is" ;)

Please listen to Al about not taking on too much too early. I am following that advice daily, and I think it helps. Since I give my husband space, we are both happier. He is slower, but he tries.

No one has all the answers in this, and all we can do is try our best. Good luck and have a happy new year. Jane

By sunshine On 2013.01.02 03:20
Oh my how all your posts do resonnate with me too.
I too have felt on many an occasion that I want out and I cannot take it any longer. Like the rest though, I love my guy and that is the glue that keeps me with him. And he loves me too. Oh what a journey this is for all of us.
We had Christmas this year and it was really a nice one this year. We stayed at home, had family in, and a friend that helped me out a lot. A friend that gave me the lift and the light I needed to create a happy Christmas for us all.
Something I learned this year was that I do not need to stress over all the things I have in the past. One of them being pleasing everyone. I still felt the feelings but I could tame them down. Take care of myself and my hubby first and foremost.
With my husband's apathy and lack of initiative-we still have our ugly moments around this -- I'm impatient - he's slow etc etc.
I am slowly learning to pick my battles and finding that we aren't having nearly as many disagreements. I ask myself "is this his stuff or is it mine?" If it is his I get a perspective, if it's mine I get a perspective too but then I also have a choice if I want to be at the effect of it. Please don't misinterpret my post that I think I have it together. Far from it. I'm sharing my thoughts in hopes that it will help someone with the struggles along this difficult journey with our loved ones.
I absolutely, very strongly, cannot stand this --------disease. It has changed everything in our lives. Everything that we shared from our families, friends, intimacy, activities and it just keeps on affecting affecting affecting. However, now I am very determined to make choices that will keep us in our hearts and loving one another and not fighting and being at the effect of each others fears, anger, stuff. We can't commuicate anymore but we can get up in the morning and tell ourselves it's a new day and try to make it the best that we can. The days that I simply cannot do this and I awake dead tired or still frustrated and upset from the day before, I sometimes choose to pull the covers over my head for a little longer or get up and do something I enjoy once I get us going. Aghhhh! I know this is not a fun life and I miss the fun but it is our life and I'm here until the end.
This forum has been a lifesaver for me when I have been at the end of my rope many times. And it always seems that when I come on to the forum and read the posts, I always find the encouragement from someone elses experience to keep on forging forward with renewed hope.
Taking time out with a friend or family member can relieve the pressure too because we are surrounded with unconditional love and the human touch, be it a hug or a pat on the back. Sometimes. A friend is often a good bet if family is strained. A soft pillow to put your head upon to cry, vent or share to get a perspective.
My wish for each and everyone is for peace, love, caring and unconditional love and acceptance from yourself and anyone who comes into your life. May 2013 provide us all with strength, wisdom and an open loving heart that we may nurture ourselves and our loved ones and be in a content happy place from within.
Hugs to all.
Sunshine :)

By jcoff012 On 2013.01.02 09:22
Wpw. Sunshine, what an amazing post! Thank you! Love and hugs to you and your PWP. Jane

By cmonge On 2013.01.02 12:24
Thank you all for your encouraging words. I have had the worst 2 days with my PWP. So I will just leave him today for shoe shopping and to meet with a friend who will make me laugh. Do I feel guilty? A little. But the dark alternative is far worse. We all need to take care of ourselves. If we don't then we too cannot get up in the morning and and we are no good for them. Sometimes we all know that they choose to prolong the moods and self-pity and want to take us down with them. We can't let them do that.

By parkinit On 2013.01.12 22:34
Sunshine -
You are that! Thanks for your encouraging words.

We have vented and today is a brighter day for me. :)


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