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Topic Sabotaging Plans? Go to previous topic Go to next topic Go to higher level

By plcpainter On 2011.12.21 13:12
My 79 year old husband with PD seems to be sabotaging any plans I make. Yesterday we were to go to a book signing of a very dear friend of mine. The event was about 75 minutes away so not real close, but I'd planned a leisurely drive with lunch, a rest, a brief stay at the signing and then home. Our ETD was an hour after his 2nd dose of Rx for the day; a time when he is usually at his best. Fifteen minutes before we were to leave, he starts to complain/exclaim how awful he feels. He is weak. He is tired. He doesn't say he doesn't want to go. He just goes on and on about how bad he is. I say, "Well we know this happens don't we? How about you nap and rest on the way down? By the time we get there you'll probably feel better...and either way, even if you feel badly at least you will be doing something fun". No, he thinks he just wants to go to bed and nap, which he does. We miss the event. In 2 hours he is up and all happy. I am not. I can't help but feel this is a passive aggressive behavior because he didn't want to go. I am feeling resentful and angry. His dementia is worsening and trying to reason with him is like trying to reason with a tired 4 year old. How much do I hold him accountable? When the fog in his brain lifts from time to time he is quite cognizant of his actions. On a recent trip to the neurologist he was all chatty and "up" -- way more than I ever see him at home! If he can put this on for the doc then why not me? Now he's already talking about not staying overnight at my parents on Christmas day. My folks are 88 and 86 and we haven't spent a Christmas with them in 5 years. I really want to go but I think he's going to sabotage this too. If it weren't Christmas I'd get a caregiver for the day (which is what I should have done for the book signing in retrospect but he said he wanted to go...). I'm not thinking very nice thoughts about my husband this morning and feeling more like Scrooge than Christmas Spirit. Longing for Christmas Past...

By lurkingforacure On 2011.12.21 15:10
I think I'd get a caregiver so that you can go with the plans you've made. I would not tell him that you've line it up, though....wait and see how it goes. If he starts acting ugly, then explain to him you've line someone up and will be going without him...if not, then no big deal (I think you can pay most agencies a cancellation fee).

Having just lost my mom, I anticipate that you would feel really badly if you didn't go stay with them at Christmas and something happened and you never got the chance. Talk about resenting your husband then, what a mess that would be. At least that is how I would probably feel, particularly after this last book signing thing.

We've talked so much here about tough love and it's true. You can no more let your husband with dementia dictate and run your life that you would a tired four year old. Patient and kind, yes, understanding too, but you still have a life and have to have something to hold onto to maintain your sanity and function.

By poppadum On 2011.12.21 15:27
Hi, although hubby has had PD for more than 10 years. I'm still no expert in comparison with some of you. However, hubby and I have had similar problems. Your spouse may be telling you that the outing me be frightening him for whatever reason. He might not want to disappoint you but if he is "feeling ill" he cannot be blamed for "sabotaging" your trip (which he probably really doesn't want to do). He might be talking himself into feeling bad, or he might suddenly truly feel very tired. I know hubby does, even when he's looking forward to going to a "do" he is really looking forward to. Suddenly all plans go out of the window, he goes to bed, sleeps a few hours and then feels well (or maybe rested?) again. I know afterwards he is upset because he missed out but at the time felt too bad to make it there.
Hubby's perkiness also goes "up" when he's due to see his neurologist or when friends visit, but as soon as the visits are over he goes down like an inflating balloon. It might be a "men" thing, this keeping up of appearances, because I've seen this behaviour all too often in various men and various situations (e.g. dad wouldn't show that he was fond of animals because he was a farmer's son. He was expected to be able to kill a pig but lo and behold, when autumn came, one of his - lazy - brothers was the slaughterer because my - workoholic - dad had to go and chop down some trees).
Hubby doesn't have dementia yet but he can only cope with one thought only at anyone time and therefore lots of things go wrong. You wouldn't believe how frustrated this used to make me (and sometimes still does) even to the point that I felt like throwing things in utter frustration. I actually did that once, when I was alone in the kitchen: I threw an apple against a door with such force that months later I still found bits of apple in nooks and crannies. AND I had to clean it all up afterwards, so I won't be doing that again in a hurry!
I was told umpteen times by various people that hubby "set me up", "did it on purpose" etc. I fell for it because so many people said the same, until I finally understood it had nothing at all to do with him because he has always been a dream of a husband to me: attentive, charming, romantic, helpful and all the other things that women can only wish for in a man (he never even left the toilet seat up or the cap off the toothpaste - haha). So how could he become so extremely difficult to live with, being exactly the opposite of what he used to be like? I could only come to one answer: it's not due to hubby, it's all down to PD and med side effects.
For myself I put notes up in places where hubby doesn't see them but I do while doing chores: "Change what you can, accept what you can't", because I tend to forget when things get too much. Occasionally I still feel resentment and anger until I realize it's getting me nowhere. Besides, I don't like the alternatives: hubby being in a care home or 6 foot under. Nearly 20 years ago I was minutes away from losing him due to his heart condition. Thank the Lord and the university hospital specialists for being willing and brave enough to try experimental surgery on him!
Maybe one day he'll hve to go to a care home, but only because I cannot cope anymore due to my own health problems.
This is MY outlook on OUR situation. Other people will be in different situations.
Don't get me wrong, there are times that I could "murder" him. After all, we're human which we wouldn't be if we were perfect.
I know exactly how you feel and I wish I could take that feeling away form you to stop your suffering.
I wish you strength, patience, peace and understanding, all the things I wish for myself too!

By LOHENGR1N On 2011.12.21 19:52
In THE DARKER TIMES of Parkinson's Disease and I use that term almost tongue in cheek but not quite as We've made some steps in educating People about the disease. We patients were often accused of "malingering" there is a quirk with some of our medication called "on/off periods" Where We can go from tired almost bedridden to suddenly feeling a lot better and more active and up. The Medical field didn't know what to make of this and Professionals and the public said We were just avoiding doing things or "sabotaging plans" when We didn't want to do them. Many now know that this is not the case it is the disease or side-effects of medication of course there might be a very few might use the disease as an excuse but this is much more rare than the rule. Parkinson's Disease is a roller coaster for all involved and I can say that for the most part We patients don't want to upset anything anymore than already gets ruined by Our disease. We're not awake at night planning acts of sabotage or ways to avoid plans of the next day or week. Secondly dementia is progressive and I believe many referred to as having mild dementia or times when the head is clear are most likely to be suffering from delusions from medicines.

Also a thought for caregivers to consider don't plan a departure time for when We should be feeling best! Plan for arrival time for when we're at peak benefit of our medication. We can rest or sleep on the way and then feel up to whatever when we get there instead of riding there knowing "oh G-d! my med's are going to be cutting out right after we arrive and I'm going to have to somehow try to hold it together until the next dosage kicks in (if it does). We're nervous about going and then the anxiety ramps up as we sense the ticking of our medicine wearing off and fearing how we're going to cope until it works again next dosage. We become more and more self-sabotaging because anxiety causes our disease to manifest, making use more anxious and in turn making our disease act up more (a vicious cycle is set in motion) Then You get upset and nervous fearing we're doing it on purpose and resent us .........the cycle ramps up and everyone ends up a mess!

To those well intentioned people who know nothing of the disease but are quick to suggest sinister or ulterior motives to our actions, We're not 4 year olds trying to get OUR way (and I mean those not dealing with our disease those who are not caregivers,) But those who give freely advice they know nothing about. We're not in the dark ages anymore and your questions have answers for the most part. This is a confusing disease and dealing with it we all need help. That's why the forum is here to help and with help from those in the trenches fighting everyday along with a few patients and courageous caregivers/partners who continue to stay around to help Us after Their battle is done and it would be easy to walk away. Keep posting, we're all here to help however We can. Take care, best of luck and hang in there.

By sunshine On 2011.12.21 23:39
Oh my gosh - I had to respond to these postings. You have no idea how all of you sharing has helped put my mind at ease. I too have had very similar situations and thought I was going crazy, that my husband was trying to really sabotage any good that I tried to do for him no matter what. But you know, now when I reflect back over the past, which I don't like to do very often, I can see where things are coming into perspective. It seems to be so easy for others looking in from the outside to pass a quick insight (meaning well) from a point of view taken from someone who does not live with PD on a daily basis. I think too, that very often that a lot of the friends that will stay with us are very often single and sometimes have had very difficult marriages, and they see what is happening and they share their insights from a point of view of someone who has been hurt. PD, if we don't get it into perspective can absolutely destroy the love and relationship we had with our spouses prior to the PD taking over. This is such a crummy disease to manage, because we can't really, and it is so hard to live with because every day it changes for us, the caregivers, and also for our loved ones. I just want to say thank you for waking me up here. I have felt this type of insight coming gradually because I too have felt like it was extremely frustrating and lost it and wanted to run away and never ever return. But you know, like others, the bottom line is I am still very much in love with my hubby, and when I am fully rested and not feeling overwhelmed, I know I want to truly be here until I can no longer be. I guess we have a very sacred place here on the forum to share our inner most thoughts, fears, weaknesses and know it is all part of the journey, shared by only we who live with this nasty disease. It sucks sometimes a lot but oh my goodness when our loved ones give us a glimmer of who they once were, even for a few moments all the other stuff just seems to get erased away for a little while. It's a little crazy making for me because it is so complex yet so simple if I let it be. Awwwwww!!! :) thank you everyone. You all reached me and I am so grateful to you for sharing your truth.

By poppadum On 2011.12.21 23:52
Picpainter, you've heard it from the "horse's mouth" through Lohengrin. That's exactly what hubby and I experience, only I tried to explain it from my point of view as a carer whereas Lohengrin experiences it himself.
Add to it that if/when dementia has set in, anxiety, worry about getting things wrong or "making a fool of oneself" while being aware of the latter before or after the facts can be extremely frightening.

Once upon a time I was due to guide a group of blind people through the museum where I worked. Wanting to try my best because this was a first for me, I blindfolded myself and tried to make my way through the museum I thought I knew every inch of. I was shocked to find I knew so little. For instance steps up and steps down suddenly became very treacherous, room dimensions seemed to have changed, trying to explain the looks of objects to non-sighted people was nigh on impossible for one with sight because we "see" things so differently.

This is how it works for a PD patient and his/her carer: the carer can only imagine how it is but he/she can try to understand things better by putting a "mental blindfold" on. In other words, try to walk a mile in their shoes. I'm trying to do just that, but don't expect it to work from the 1st few steps.

By plcpainter On 2011.12.22 11:26
Thank you all for your comments, esp. Lohengrin's for the "insider" perspective! I have been caregiving for 5 years now and I "know" the ups & downs (literally & figuratively) of PD, but given the right set of circumstances I slipped into old paradigms of reasoning! I KNOW my husband wasn't purposely sabotaging our plans...that just isn't who he is/was but it sure felt like it on Tuesday! PD is so dastardly that it refutes the old saying: "If it looks like a duck and quacks like a duck..."; well, it might not be a duck if it's a PWP! So just because hubby looked like he was passive aggressive and acted like he was sabotaging... he wasn't. He was just manifesting the nasty quirks of this disease.

Lohengrin: Your comments about the ramping up of anxieties was right on target and a helpful reminder for future scheduling. My PDer also has suffered from prostate cancer and is completely incontinent which adds mightily to his anxieties about going out into public gatherings.

This all seems very, very hard and our little world we can live in gets smaller and smaller. I will just have to make it as rich as possible for this man I have loved so mightily.

Blessings to you all -- the days are growing longer and brighter! We've celebrated the Solstice!

By parkinit On 2011.12.24 19:10
I, too, have difficulty making plans because spouse will suddenly feel poorly. I chalked this up to the stressful situations as well. However, the other side of the coin is if this is something he really wants to do - albeit it may be stressful for him or put him in the public eye, he is ready and able to attend, even while drooling and barely able to move and people are grabbing at hankies to dabble his chin.

Lo, in your good wisdom, help me understand this behavior.

Spouse just told me last night if I didn't take him to a friend who was in the hospital unconscious he "would drive himself" even though he hasn't had a driver's license in years. This friend was on his death bed and I felt it was a very private time for family, so didn't feel as driven to see him (he was unconscious) as my spouse. The drive was an hour away. I drove him, but I suggested that he was playing "emotional blackmail" by threatening to drive. I felt this may be signs of dementia as well with not making good judgment. Your thoughts? My spouse had never even met the friends wife, so I'm sure it was a bit awkward when he entered the room (and yes, the hospital let him in to the ICU room).

By LOHENGR1N On 2011.12.24 20:17
parkinit, I don't know about "my good wisdom" but I'll toss this around my mind as I reread it a couple of times and see what comes out.

The first part; "However, the other side of the coin is if this is something he really wants to do - albeit it may be stressful for him or put him in the public eye, he is ready and able to attend, even while drooling and barely able to move and people are grabbing at hankies to dabble his chin." Lets just say He's marginally able to do it, He's drooling barely able to move, people dabbing at his chin. Come on you've got to give me that, ready and able sounds like hop, skipping and whistling his way there. To step back and read that it looks a bit different doesn't it? I do understand your frustration however you're looking from a distorted view when hurt, resentful and a bit p*ssed off. What you think or thought you were observing isn't what you described. There's no fault in that either on you or your spouse the fog of Parkinson's Disease is hard to see through even in the best of times. There was something about being there or attending that to him was important enough for him to think he had to drag himself there. We have to pick and choose our battles, what it was that was that important? If he can tell you, ask him if not you'll have to go "Mr Monk" on him, I suspect if you can discard any hurt and resentment you will find it.

The second; "I drove him, but I suggested that he was playing "emotional blackmail" by threatening to drive. I felt this may be signs of dementia as well with not making good judgment. Your thoughts? My spouse had never even met the friends wife, so I'm sure it was a bit awkward when he entered the room" I'm going to give him the benefit of the doubt on the emotional blackmail. We patients know we're doing a slow death march, We know our time is limited and limited in "stages", mobility, speech etc. His friends time was just about up. He had to go then or miss going at all. I don't know the dynamic's of the friendship, what they might have promised each other (they might have said whichever of us goes first the other WILL be there for him.) I don't know, through our struggle with this disease so much is taken from our control that we can at times fight seemingly ill rationally to do things. To illustrate; My dear friend with Parkinson's father passed away a few years ago. The family spread his ashes that fall in the woods where He enjoyed hunting. My friend silently promised his father he'd return in the spring by the time a kind of wild flower blossomed. That spring My friends wife came home from work and found the house empty and my friends truck gone. She panicked! He had given up driving a couple of years before! The truck wasn't registered, His drivers license expired! His Sister and Wife found Him sitting under the tree by where the ashes were spread, to get there he drove about 25 miles and because he had trouble walking he had crawled through two brooks and some 3 miles into the spot......why.....because he had promised his Dad and the time was running out quickly. Was it wise? Was it rational? Of course not! But when you lose so much and the disease keeps taking? Well I'm not condemning him for his actions, neither will I condone them. I'll just say that in trying to fulfill His promise to his Dad come hell or high water he was going to do it or at least give it a damn good try. In this light I don't think your husband was in any way thinking about emotional blackmail he was just thinking about getting there. Well that's my two cents worth on the question I don't know if I'm near the mark or missed it all together. hope it helped some. Take care, best of luck and hang in there.

By lurkingforacure On 2011.12.25 11:11
I feel so mean having posted what I did, as I see all the points everyone here has made. My post just didn't come out like I meant it. I guess what I was trying to say is that if you are at that point of missing an event you had planned and need to attend (and others are counting on you to be at...) I think it might be wise to plan ahead for the contingency that your loved one may not, after all, and for reasons totally beyond anyone's control, feel up to going.

Better to go alone, if you must/are obligated/would really regret or resent not going later, with your loved one taken care of at home, than to not go and deal with the emotional aftermath of it all.

There are many things I have had to forgo and even more that our children have missed or not had their beloved daddy at because at the last minute his PD just would not allow him to join in. It does truly suck. I used to get mad, not at him, but at the PD, which I would later realize was a useless expenditure of energy. I still get frustrated, but have realized that if it's something I have to go to (teacher conference, for example), I just go alone. I feel like a single parent most of the time and I guess I am. The hardest thing, though, is knowing how awesome of a dad my husband would be but for the PD. Our kids are just missing so much and I hate it for them and I hate it for my husband, he knows what he's missing and it just adds another layer of loss to the whole PD pie.

By parkinit On 2011.12.25 21:32
Lo -

Thanks for your honest perspective and relational story. My hubby is a "hell or high water" guy and I believe that he felt it was the honorable thing to do to show his respect for his friend in hindsight. I see this now. After our visit, his friend did pass away 7 hours later. Forgive me, dear spouse.

Lo - your response really helped me. Thanks for taking the time to respond.

By LOHENGR1N On 2011.12.25 23:49
parkinit, No problem, glad I was able to be of some help.

By SouthernAngel On 2011.12.27 14:34
I am just now reading this post and am grateful for this being brought up. I have been feeling like my husband has been sabatoging our plans to do things together and I sometimes resent the time he spends at the gym (he coaches tumbling, and use to own his own gymnastics gym). I do know that right now my husband is using his energy to do what he really loves to do and it is very theraputic for him as he forgets he has parkison's for those couple of hours. I often feel that we get the worst of him when he is at home. Our children are 17 and 18 years old and will be moving out or going to college soon and I want us to spend as much together as a family as we can and that sometimes can't happen because hubby is not feeling well. I have taken the kids and done things without hubby, but I feel bad for doing that, and wish hubby can be there too. When we are able to spend time together it is wonderful but few and far between now.

We no longer enterain at the house as often as before and when we do, we have to plan it far enough in advance so that my husband can make sure he gets plenty of rest the day before and the day after. Hubby does put up a front and does not want others to see his tremors or destonia. After reading this post does put things in more of perspective for me and I know that I will have to change how I handle this and have to remind myself that most of the time it is not hubby but the Parkinson's.

Thank you all for you posts and remind each of us that we are not alone in dealing with these things.

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