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Topic Someone, please, explain this to me... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2015.12.30 17:01
I have been posting to this board for a few years now, and find it very interesting and informative...BUT, would someone please explain to me why so many caregivers are seemingly so negative in their comments?

Please, please don't get me wrong...I DO understand caregiving and especially how it takes a toll on your mind, body, and spirit. I honestly do...

What is hard for me to understand is the mindset of depressingly negative comments we see here. I don't see that on the cancer boards...and I truly wonder why. In both cases, the patient did nothing to cause the illness, but it seems many are far less tolerant with PWP.
I guess it bothers me because in my heart, I wouldn't want my husband, who is my PWP, to feel trapped or depressed because of an illness I had/have. He hasn't so far, so I want to do the same for him.

Please understand that I am not "holier than thou"...just cannot get a grip on the mindset that as a spouse of someone who is ill, that doing what is needed and helpful is just expected, accepted, and part of marriage. Isn't it?

I cannot say that this is not a cruel disease, but it isn't just the caregiver for which it is cruel. Bottom line, we will go on...we will survive...but, our PWP slowly deteriorates both physically and mentally to a state for which he is demeaned and saddened much more than we. And, for that, I am saddened. I want the physically fit man I married almost 49 years ago, but in the last eight years, we have learned to accept the life we have now. I want Carl to have time to NOT have tremors or not to take so many meds in order to function...but, we keep going on knowing our wants and wishes are fleeting, at best.

One of my very first posts was about Carl's anger issues, which Al addressed...I was, and am, grateful for a sounding board to answer such feelings, so maybe that is why I am disturbed by what I see as negativity towards our PWP. I truly understand how sad and angry we all are AT Parkinson's, but I would like a better understanding...would someone clarify this for me? I wish you all well and I wish none of us had to have even one painfully sad thought about a disease that is so cruel. Jane

By VioletV On 2015.12.30 17:15
Hello Jane,

I can imagine that there are many reasons why a spouse might be angry toward a PWP for whom she is caring (making the assumption that most of us who are caregivers here are women).

There have been some who posted about husbands who have been harsh, unkind, even abusive but who now need intense care. Hard to be loving to someone who, when he was able-bodied, was not kind or caring to you.

There are some whose PWPs seem to take all their ability and energy - what little they have - and use it outside of the house, treating the caregiving spouse as though she is just there to take care and has no needs of her own. I think that would be rough too, if he can go out with friends, or take a drive, or go fishing, but leaves a huge mess and expects his partner/caregiver to simply be ok with it.

And, there are some, like me, who love their PWPs and are as caring and warm as possible but who still experience the exasperation and despair of getting "nothing-back" from a partner whose metal abilities have dwindled to almost nil. I find it so freeing to be able to come here and be just as miserable and cranky as my worst-self can be, since I then don't direct that stuff to my husband. Still it is unspeakably hard to get almost nothing back. My husband is a lovely and caring man, but with the diminishing of his mental abilities he just can't see that I have needs. Even though he often says that he recognizes how much I do, and that he wants to meet my needs, he just can't.
Here's an example.

I have been wanting to get to paying bills, doing a little work for my small amount of paid consulting clients, reading or anything but just tending-- the caregiver we have just hired, for very good reasons, could not be here yesterday or today. So I told my husband that I needed an hour or two to get some things done. He says "surely there must be something I can help you with. Why do you think you have to do everything yourself..." and goes on to suggest that I don't respect him, etc. etc. So, instead of being able to get even a small amount of work done, I spent an inordinate amount of time with him saying how much he wants to help, etc. etc. It only ended when I said, "ok let's write the letter to your doctor that you wanted to send..." So that was fine, but the doctor won't even read it until after the holiday, I'm sure and meanwhile the year-end donations aren't done (and tomorrow is the 31st) and the things my clients need... well ....

So it is just HARD. And if I don't complain here, or to my very supportive daughter, then it's going to come out at home.

And, mind you, we have many resources, funds for caregivers, a full time housekeeper etc. It would be very hard not to be upset from time to time if I had to do it all, all by myself.

Whew!. Sometimes, I think we just need to vent.


By mylove On 2015.12.31 09:20
I think also with cancer, there's an unspoken cultural expectation of the "saintly sufferer" (i.e. Everything they do is ok because they're DYING, etc). We don't get to express any frustration with cancer patients because it's culturally inappropriate. I think you'd have a hard time getting any caregiver over there to cop to any honest feelings of exhaustion and frustration.

And I think that's what you get here - a safe place for someone to validate that it's ok to feel exhausted and frustrated, and encouragement to keep going. It's of immense value for folks to feel like they're not the only one in the world who has 10,000 balls in the air at one time and "why can't you just cope and smile and be happy like everyone else??"

I used to feel the way you do about some of the sentiments here (then again, we had people here once upon a time who I think really loathed their PWP, and I was reacting to that). I don't feel that way about any of the folks here now....I feel this sense of desperation and a reaching out for someone to hear what they say and tell them they're NOT crazy, that this IS extremely difficult, and that its ok not to be Mary Sunshine 24/7. This hoard doesn't look any more negative than parents' boards, in that respect, but it's somehow more acceptable to acknowledge moms needs than caregivers.

My judgment here changed once I started therapy for myself. I see now that this board is peer group therapy for folks who can't get out to see a counselor. Think of this as "PD AA". :).

That said, we also need the folks who keep our chins up. That's you, dear Jane. Please keep doing what you do. :)

By jcoff012 On 2015.12.31 17:29
Michelle and Violet, thank you for your responses...I knew at least the two of you would! Hugs.

I hate to put myself in the "Pollyanna" group of life travelers, but maybe I am! Carl keeps saying, "You are a realist and you are strong. I am not worried about you surviving me." ,

That said, maybe what I wish is that everyone could accept life for what it is, and pray for the best.

I, too, love my friends here and completely understand the need to vent...that is great...I guess what I want is that our great caregivers here have more happiness while pushing forward. Most of you know our lives together have been full of sadness, but I want you all to know to accept and know there are others who face or will face the scourges of PD and we will do so together...I just wish I could take each person into our home for a hug...and let you know what you are doing IS useful, helpful, and you ARE loved...I am, and I always will be loved by an amazing man...

Michelle, you are so right...this group is now full of wonderfully strong, kind caregivers...brought together with love, Hugs and Happy New Year!

By EachDay On 2016.01.01 20:37
There are many caregivers here who are experiencing what might be known as ambiguous loss -- the loved one is absent and present at the same time. This is a confusing state and making sense of this situation becomes immensely and increasingly challenging. Different than those supporting someone with cancer or losing someone with cancer, no one comes to you to validate or support your loss but often say "You are lucky to have your mate or your parent". While that might appear to be true, you don't really have them. Not many understand what is happening with you and your spouse.

This forum seems to be one place where when the situation seems to be even more difficult, a caregiver can express what is happening, hear from others kind words, and be validated that what they are doing is what they can do. We can not fix everything even though we try and feel frustration that we can't. It may sound negative and complaining but is just expressing their current reality and trying to make sense of it. Some days after many nights of being waken 4-5 times to help, nothing makes sense anymore. I usually feel empathy and compassion and also feel that I'm not alone in this. There are others out there who get it. Tomorrow I can get up and do this again. Many of the posts include information, tips, and what I need to watch.

By umajane On 2016.01.01 23:17
Yes, I love my husband and am very sorry that he has PD and all that it entails.
He has PD dementia and seems to be protected from the sadness. He is quiet, comfortable, sleeps hours on end and eats well. We go out for a nice walk daily with our dog.
I am however lonely and alone. I am tired and exasperated..My husband hardly says a word, and sits in his chair.
I know I should accept all of this and I do to a point but I am human too. I miss so many aspects of our former life. There is no socializing which is important. Last night friends came over for New Years Eve and he slept the entire time...Is this fair to friends???
I do everything here but I have feelings and wants of my own. Is it wrong for me to feel that way??? I don't think so!!!!!

By Dazedandconfuse On 2016.01.02 11:15
I have been reading this forum for some time and have really benefited from some of the remarks. There was also one time I was so frustrated, I needed to vent. I love my partner and had told him he had but one job in this journey and that was to fight this disease as best he could and I was prepared to take care of him! He has ignored all of the suggestions from his physician (stay active, exercise, eat healthy, lose some weight) with what looks like little regard to how these factors effect my ability to care for him or the effect it may have on my physical health. I thought this would be a safe place to vent where my frustrations would be met with some empathy. Instead I was made to feel a bit ashamed that I, a healthy caregiver, was complaining and being insensitive to my PWP who had this dreadful disease. I think everyone's situation is so completely individual we should all give each other the benefit of the doubt that we are all doing the best we can under the circumstances. Just my two cents.....

By VioletV On 2016.01.02 12:10
I have to think that no one here should judge others for what they think about the experience of caregiving. It's bloody hard and while we caregivers may be healthy compared to the person with PD many of us have to deal with all sorts of hardships with almost no help.

I've recently developed hip problems, arthritis, pain etc. In some other life the fact that I can't lift a leg to get into the car without manually assisting myself might lead to a supportive other person helping ME. But that help isn't here. When I'm tired, or sad, or overwhelmed, it's just me. So I feel absolutely entitled to be unhappy about that.

It's interesting to me that I keep thinking about this thread. Usually I just post and then get back to my life.

Just yesterday I was going through old computer files and came across an audio recording of my husband reading poetry to me. I brought back to me what a sweet and sensitive and cultured person he was then. I felt doubled over with grief from recognizing that that man is just GONE. Who remains is a somewhat querulous old guy who can spend all day (literally from 7am to 6pm or later) where the only topic of conversation is the schedule for taking his pills and whether he should or should not advance the timing of one dose or another . . . ). The same conversation all day every day, since his short term memory is gone and he does not recognize that he has asked and I have answered, the same question over and over and over...

So, dazed, I'll add my .02 to your comments. It is incredibly difficult and having this place where we can come and tell it just-as-it-is contributes to our being able to continue to give the care our PWPs need.

Apparently I wasn't done venting yet....

By lurkingforacure On 2016.01.03 00:05
Some of us here got hit with PD earlier, before retirement and Medicare, so we have financial stresses others simply don't: our mortgage, health insurance/medical expenses, college for our kids, retirement (is that even in our future?).

Because we are early onset, my family has the stress of raising our children while struggling with PD. This is really hard on multiple levels and I cry daily.

Then we have the stress that comes with any chronic illness and PD in particular. Everyone here gets that.

So it's just really hard, and it's really a lot. PD is relentless, and exhausting. For everyone. Be he patient, caregiver, or family member/friend: everyone loses in PD land. Being able to come here and vent and say anything, without fear of judgment, is a godsend for those who cannot afford the time or money for a counselor. At the same time, reading posts of others is validating, and lets us know we are not alone.

I think everyone here is good, loving and kind: they would not be a PD caregiver otherwise. It's just that we are dealing with so much (see above). When we come here, at least for me, it is usually when I am feeling overwhelmed and struggling. The posts I write when I am struggling are very different than the ones I would write if all were well. I think it may be that simple.

By carman96 On 2016.01.05 10:15
I think others have answered your question well dear Jane.
It's not that I don't love my husband. I do. It's that he is almost gone mentally and the physical changes are getting harder for me to deal with.
I've said before that I hope your Carl never gets dementia. But in several years, as it the caregiving gets more difficult, you may begin to understand, unfortunately.
I don't come here often anymore. I am in another caregiver group also.

By ResistanceFutil On 2016.01.06 08:23
Some understanding might lie in the Big Five personality traits (summary here:

I think the last thing a caregiver living with a spouse or parent with a debilitating disease needs is reproof, no matter how slight, of their reactions to the caregiving experience.

If one believes the big five model to be accurate and/or helpful, it's easy to understand that both caregiver and spouse fall somewhere on the spectrum, reactions will be personal.

One thing we all need is support as this is a hard road to trudge.

"Virtue is its own reward" and maybe a heredity-related good personality and nurturing upbringing is an even better reward! You have always seemed upbeat despite your many life challenges - you may be even more fortunate than you realize!

By moonswife On 2016.01.08 04:37
Oh, Lordy....this topic could not have come at a better time than today. I read all the posts in the thread and can empathize with every single one. Michelle, Violet and Jane and especially Al have wisdom beyond mine. I read posts daily, but I post rarely. Tonight I just want to share my meltdown last night. I might remind you I still work 55+ hours a week at my business, but my office is 3 min from home. I have been relying on a neighbor, cleaning lady and 3 long time friends who "drop in" once a week (always on the same different day of the week) to get me past that all important hurdle....the time when optimum Rx doses have hubby functioning well on his own. I do not know if he has caught on, as I usually warm up the kitchen about 5:30 with a baked treat. So it is warm and ready when "cornbread Barry" or "cinnamon roll Nidia", or "blueberry muffin Billy" or "Bisquick biscuit Erlinda" pop in for coffee around 9. By 10:30 hubby is up dressed, fed, and had a good chat...and starts his projects. THEN DISASTER HITS. He seems to have no filter when it comes to his limitations. Or if he does, he fights them mightily. Kaiser started a new program for Parkinson's patients with home physical therapy. They think him the perfect candidate. Tuesday's PT wanted a grab bar turned horizontally to make it like a ballet barre. He likes them vertical so if he is down he can climb up like a monkey and raise himself up. We have 71 in the house...but none to the young ladies liking. So she said "just turn this one sideways". HUGE MISTAKE. I had them installed by my contractor with really long fasteners. Unable to remove them he resorted to a crowbar. And when that did not work his frustration level peaked and he swung the crowbar like a Baseball Bat. That left two holes you could put a Basketball in, and lose it. My daughter stopped by, saw the damage and took Dad to lunch to calm him and distract him. I forgot my cell charger and came back at lunch to find a REALLY BIG MESS and two holes and the bar....ready....still attached to the studs vertically. Falling to my knees "Lord give me strength" I grabbed the charger and went back to work. The real test came when I came home to see a bucket of quickcrete in my bedroom. But the bar was OFF. So dinner time brings an old (92) neighbor and his daughter to join us before he ends his holiday journey. We retire at our regular 10 after evening pills. Skipping forward to 2 am. Pill time again, and he says to me " I just don't want to take any more damn pills". "But you won't be able to move and you will wet the bed" I say. "SO" says he. "Nope, you need to turn your head this way so I can put the pills in your mouth and give you the straw cup to swallow" said I. "NOT TONIGHT" he replies. Now for the meltdown. I march back out to that big ol' garage and get that crowbar. I bring it back in, draw back like Babe Ruth and put the biggest hole of all in the wall with one blow. "what the hell" he screams. "Well, if you can choose to make holes during the day, and then leave it for me to clean up, and then refuse to take your pills and say you will just pee the bed, and leave it for me to clean up I WILL MAKE MY OWN MESS AND ONE I WILL ENJOY CLEANING UP". Needless to say he took the pills, and we went back to bed until 5:30. Neighbor Nidia showed up right on schedule as I was dashing to work, only to ask If I heard the gunshot at 2:10 am. I hung my head in shame, showed her the hole and skedaddled off to the office. I bet she had a good one to tell her husband last night at dinner. I think I may have personally been guilty of all the Big Five personality traits, and I would NEVER judge any of you lest you judge me. You can see our story (during my saner moments, at http_kaiserpermanentecarestories.org_justine-and-mike-miller-steady-together-despite-bumps-in-road .

By jcoff012 On 2016.01.08 13:15
What a GREAT story and even better reaction! Bless your heart! We can all relate to your frustration, but I don't have the nerve to do something like you did! However, I wasn't shocked you did this! I must say, making the hole in the wall must have been exhilarating! You made your point, that's for sure! Again, bless your heart!

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