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Topic Patience, patience...where is my patience? Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2012.07.09 18:38
Well, as many of you know, there comes a time when patience is thin. I reached that time this morning. Wondered if any of you feel my pain. ;))

We went to Costco, but as we pulled into the lot, he said, "Let's go to Kohl's first, ok?" I didn't say, yes, or no, but said, "We shopped on Saturday in 100+ weather, had the kids and grandkids over yesterday in the same heat. I thought this was going to be a quick Costco run; I'd rather not. We don't need anything, do we?" HE got mad, turned and walked away and has been pouting all afternoon.

Normally, he will be too tired to do a lot in one spell, so it isn't a problem, but this morning, *I* was hot and tired...I don't see how to handle his type of being inconsiderate...

Yesterday, he was telling me how much he loved me and today you would think I was a wicked witch! All I am getting is silence...hard to take.

I realize that many of you wish your PWP could react at all...and I know that stage is coming, but it isn't here yet...and I guess what I want to know...is ignoring this behavior the best way to handle this? I feel like I am not talking to my husband at times like this...but, I stranger I don't like.

By LOHENGR1N On 2012.07.09 19:28
jcoff012, This is a hard road to walk with this disease. We never know how we are going to feel from moment to moment. Seems like He was feeling pretty good at the time you describe. I'm sure there have been times you've had to cut short you trips because He's been fatigued and it didn't go over good. I don't know the distance from home to either of the stores, perhaps Khols is further away than Costcos and if going there first would set up a we're on our way home so a short stop is easier to take if his med's aren't working quite as well because well you're heading home anyway? (that would be my logic) but it really doesn't matter. He was letting you know he felt good enough for both at that time.

Yes you have every right to be tired and wipped out by the heat. He probably thought you'd catch the offer of both stores and enjoy not having to drag him and rush trying to get him out of the store because he was having a hard time of it. Both caregiver and patient at times offer a thought or suggest sometime that gets taken the wrong way ...it happens, we're human don't beat yourself up over it! Live and learn to rethink signals and communication as they change along with us with this disease. If you think about it reading what you typed it seems to me he was being considerate and letting you know he was up for more shopping if you wanted to go. Again don't beat yourself up over this talk it out. Both patient and caregiver at times, many times feel they're damned if they do and damned if they don't. Pour yourselves an iced tea blame it on the heat and forget it. Life is so short have a laugh over it. Take care, best of luck and hang in there!

By caregiverof1 On 2012.07.09 20:01
Oh yes jco I too have been the wicked witch more often than I care to admit! I do everything and yes I am often just tired, but it seems my husband never thinks about me or my physical condition. Guess he's so wrapped up in himself and the way he feels that there's nothing left for me. He is nothing like the man he once was. Guess it's part of the progression but it does get to you after a few years.

Lo had good advice. He is a great source of inspiration and practicality but when your spouse also has dementia, it's a little bit harder every day.

By cmonge On 2012.07.09 20:19
I said (it was more like an outburst) to my therapist the other day-I simply have no patience for this disease! I feel like a bad caregiver because my patience left me a long time ago. The Jekyl and Hyde personality is more than I can take. I have given up and if my spouse doesn't want to talk to me some days so be it. I am only human. Once when he didn't get his way he actually told me to leave. I was ready to move out because I was just done. I know it will only get worse too. And my spouse is losing his memory so most of the time he doesn't even remember what he does to hurt me! You really do have to take a deep breath sometimes and just walk away. Remember, at times you are dealing with someone who can act like a child and hurt like an adult.

By phoenix On 2012.07.09 21:20
Thank you all for reminding me I am not alone with these feelings of guilt and frustration and (often) anger. Patience has never been one of my virtues and I am constantly struggling to stay calm when dealing with my 62 year old/2 year old PWP. My husband too is so focused on the disease and how he feels that he really has no idea of my feelings, or of the many things I have given up to take care of him. It is really hard and I'm so glad we have this forum where we can talk to others who understand.

By jaxrock On 2012.07.10 11:59
I've heard Parkinson's described as a Rubicks Cube, as a rollercoaster, as a constantly changing puzzle, etc.

So many quick changes, so much flexibility needed on the part of us caregivers, sometimes I feel like my head is going back and forth and sideways.

I'm sure it happens to all of us..................

I have to keep remembering what my husband is going through......THAT must be the worst!

I can't imagine..............

Take care of yourself and keep on keepin' on...........

By sunshine On 2012.07.10 20:02
Oh my goodness I hear you and your frustration. This desease is ever-changing and always a huge challenge for both the PWP and the Caregiver.
Sometimes it feels like I do it all and I often, when I am sensitive and feeling really unappreciated, and I am overtired I get hurt so easily and upset so quickly. And I want to run as fast as I can, but the truth be known, given the opportunity to run and a place to go, I don't really want to do that. Soooo for me this @#%$*& PD has raised some huge challenges for me to have to learn how to deal with a very ------ unpleasant difficult life at times. "Slowly" now before I react (I said slowly) I try to stop myself, with the knowledge that I am truly the one that is in control of the situation most times. Knowing this, I have told myself that I need to keep a check on my allowing myself to be at the effect of this rotten ----- disease and or my husband. It has been helpful for me to look at it this way and I feel better about my interactions with my hubby.because I stop myself before I get totally engaged in the battle. Other times when I am completely at the effect of it all and we've had an ugly conversation or not ( silence) I have removed myself and gone outside, this is usually what I have to do, and just told myself to shake it off (and I do whatever it takes to shake it off and won't go in until I feel relief). It isn't us it really is the disease and it is trying to beat us again. It is very challenging for the caregiver because we aren't coping with the same person we once knew, all of the time. The moods fluctuate, the meds fluctuate, the compreshension fluctuates and it really can feel like a very crazy making life.
And if you have no support from family or friends the toll becomes huge on us. For myself, talking with a counsellor about my feelings very openly, ( this is something that we need as part of our life now) and making new friends if you can organize respite for yourself to go out, all helps immensely.
We are presently seeking an independent living home for us both because I really think it will be beneficial for us both in so many ways. This journey is hard and we, as caregivers, need to make it as pleasant as we can for our loved ones and very importantly ourselves. We need love and care too. Big time. And there are places where this is understood and given with no strings attached. There truly are people still out there who have beautiful hearts and care about others and are so ready to help to make this path a little brighter.
Good luck to you. It is hard and it also is so great that you share your truth and reach out for support. United we "can" make a difference.
Hugs to you. Big ones. :)

By parkinit On 2012.07.10 22:49
Jc - I know you find this hard to believe, but there will come a day when you will wish you had a spouse who could still shop with you. I do. He stays home now except for dr appts and I do wish he could still go shopping wih me.

Count to ten and take a deep breath. Hugs.

By jcoff012 On 2012.07.11 18:03
Thank you for your kind messages. I appreciate them all...and am in tears...I DO understand that the time will come when I will truly be alone; I am not looking forward to that.

Here's what I did...I kept asking if he needed anything, made sure there was food for lunch and dinner, then went for a walk, did the laundry, etc...and came upstairs...The next morning, I acted like everything was normal, started talking to him, etc...and it was a pleasant day...it's like Monday never happened.

I guess what concerns me is the loss of a day...every day is important to me.

We know what is coming; his Mom died three years ago after suffering for 22 years...we saw the freezes, the pain, the dementia, the stubbornness, and the love in her eyes. She recognized me, even when she didn't recognize anyone else. I was her relief caregiver to give my BIL respite; I know I am going to be able to handle this.

I guess I was despondent Monday because when it's happening, it is hard to ignore the angry, self centered man that he has become...We have been together since age 17, married at 18 and just had our 45th wedding anniverary...and I miss him.

I think that that is the hardest part of this disease...I miss 'us'. The retirement plans we had, the fun we were going to have, the closeness, the tenderness...sometimes we still have it; but, mostly, we don't anymore.

This morning, I told him I would die for him if it would cure him because I don't want to live without him. He said, "I love you, but then *I* would be alone!" THAT is the man I married...we both laughed and have had a good day...one day at a time, right?

Jane Again, thanks for listening...

By phoenix On 2012.07.11 21:58
Parkinit - I was thinking the same thing as more and more my spouse doesn't want to come in stores with me, so he stays in the car and I run in and try to be really quick - it just seems that with each time that I realize what was, I regret not appreciating what we had at the time. Does that make sense? I used to get really angry at being woken up a few times a night by the sound of his walker on the wood floor when he went to the bathroom. Now I have to help him roll over and use the bucket we keep by the bed and I would give anything for him to be able to get up and go to the bathroom in the night. I just know someday, probably soon, I will look back at things that seem so difficult right now and wish them back again. "You don't know what you got til its gone."

By J Friend On 2012.07.12 18:50
I can certainly relate. My husband is 4 years into this disease (I guess we both are actually). I work full-time, he is disabled/retired. Got home home from work, made dinner and was just settled on the couch to watch a bit of TV when he called me from the bedroom.....off I went, and he wanted me to pick the dog up and put him on the bed...which normally I wouldn't mind, but come one...really....doesn't the fact that I am probably tired and just now relaxing come before the dog?? Usually I have so much patience, but not last night and then I felt guilty!

J

By jcoff012 On 2012.07.12 23:31
I understand that Requip can cause the PWP to be ocd and want to shop and shop...that's my husband...he wants to shop AGAIN in over 100 degree heat...for stuff we really don't need! After this many years, come on...

But, this time I will try to keep quiet and let him go...knowing he will tire and the heat will bring us home...

Sometimes I think he wants to get out as much as possible, knowing that soon he won't be able...his daily walks are shorter and shorter and he comes home in pain...but, bless his heart, he's a fighter...

So shall I become...

By parkinit On 2012.07.16 10:48
JC - Today there is another star in your crown. Smiles to you today.

My wish is that the kindness you've shown will be reflected right back on YOU!

By kaykaykan On 2012.07.20 03:08
I laughed at myself when I read your post. There are so many times that I am told I am mean. For about two weeks that is all he said to me. He also told the doctor I couldn't do his meds because I was mean. Thank goodness he has been seeing his doctor over 20 years and he knows I am not mean, but sometimes I feel mean and guilty when I try to explain my reasons for decisions I have made to a man that hasn't the reasoning to understand. I have learned to walk away, shake my head and tell myself to just do the best I can and not beat myself up. I am learning to stand my ground when he presents unreasonable requests. I just tell him I am just not able to do that, but would if I was able. I still work a physically hard job that allows me to have the flexible hours I need to care for him. If I can't stay strong and healthy, there will be no one else to give him the daily care I try to provide. Sounds to me like you are doing a good job. Just remember you have to take care of yourself so you can care for him.

By lilflower On 2012.08.01 08:27
Yes we all have those days when we are so tired we want to drop. But our jobs are never ending I get upset sometimes when he waits until I leave the room and then starts to talk to me. I run back in to see whats wrong and he gets a smile on his face and says I just wanted to say I love you. Darn him how can I be mad now.


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