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By poppadum On 2011.11.06 10:12
Most of you seem to be so enormously positive in spite of living with a PD spouse, a lot of you even holding a job down and/or caring for children.
I no longer go out working. For some years I coped all right but the last 2 years have felt like hell on earth, in spite of my PD hubby's medication being meticulously and regularly updated. His PD is checked out each month by his general practitioner and every 3 months by our neurologist (I'm a migraine patient and have Ménière's disease). His heart specialists (he sees one for his heart condition and one for his implanted cardioverter difibrilator) see him on a 4-monthly basis. His medical follow-up could not be better.
Nevertheless I just don't know how to cope anymore. A lot of your spouses seem to show very similar behaviour to mine and yet you still seem to be coping reasonably well. I on the other hand have been feeling like a wreck for the past 2 years, hanging on to a sheer rock by my fingernails. It's not through lack of help though. Our medical insurance provides a cleaner 4hrs/2 weeks, and family help 4hrs/week. My G.P. advised me to see a psychiatrist which I started some 2 months ago and she follows me up on the medical side. So far I saw her twice. She in turn referred me to a psychologist whom I've seen once so far. The 1st kind of anti-depressant which she added to the one I was already prescribed by my G.P., made me swell up and continually starving because it interfered with my brain's "full up" sign. Within a month I had gone 3 clothes sizes up. The extra weight which I cannot seem to shed, causes me to get out of breath quicker than before due to my dicky ticker and it gave me even more spine trouble than I already had. The latest anti-depressant doesn't seem to do much at all because a lot of the time I still live under a dark cloud and I keep catching myself out, wishing to "wake up dead".
I look after my mother who lives 3 miles away. She is 92 and lives alone. She too gets help from a cleaner and has meals on wheels so for me it's just a matter of checking up on her, do her shopping and keep her cupboards and fridge clean and tidy(ish).
By the time I get back from Mum/shop/post office... I usually find the house in a shambles and I never know what newly purchased stuff I'm going to find. One example: we already have 7 vacuüm cleaners. It feels like each time I leave the house I get punished for it.
Every time I think I'm back on track and quite contented because I'm feeling like I'm managing ok, something happens that knocks me back big time. The latest is not being allowed to see our 4th grandchild, now 7 weeks old. Although the family only live about 8 miles away we only get to see the grandchildren twice, sometimes 3 times a year. The pain this causes feels simply unbearable, making me wish I would shrink and disappear forever.

By karolinakitty On 2011.11.06 10:58

It is not unusual for a caregiver to go through what you are going through....depression due to a whole mess of reasons can overtake you and make you feel like you are the only one in the world that feels this way and then you throw guilt on yourself because you can seem to keep up like others.....(you must be like the guilt thing)

I no longer work either as my guy went downhill fast at first with dementia, but, now is better than he was almost 2 years ago....I could possibly go back a few days a week, but, I also know for fact that he could again do a downhill turn...this disease is so wicked, both for patient and caregiver.
I also can relate to the extra weight in a different manner... I now weigh about 80 lbs more than i did when i was work was very physical and now just being around the house, not being as physical as i once was has done me harm too. I am also going through menopause which just knocks me for a loop in that area too.. Putting the weight on is easy, but getting it off now is a real struggle....I don't have health insurance so i can't go to doc and get something else worked out... I need to get physical again..maybe a private trainer or something but don't have the dough for that...
Anyway...other than the extra weight I am relatively I am blessed there.....
It seems you have help in good areas, but, when you leave the bottom falls out...maybe revamping when you go..would help someone else is there..then when you go home ...things won't be so bad....rearranging our schedules to deal with problems can be helpful and actually help us in the long run....I know someone who does her grocery shopping at midnight because that is his best time for sleep...maybe a little crazy, but it works for her....
As for family....
this too is quite common for us caregivers...losing friends and family...them not wanting to come over because they don't want to deal with the issues involved....or those who simply live too far away to see...It is hard, but it is something we have to accept....we lost a lot of friends in the beginning...people too afraid to come by, whether they think it's contagious or just don't like dealing with someone who has a progressive doesn't matter.. you truly find out who your real friends truly are... plus the think we as a society would have come out of the dark ages when "sickly" people were outcast or hidden from the world as we were too ashamed to call them family, but. unfortunately it still exists.... Some parents these days, just don't think children should be exposed to this.. how silly...but again it is a reality, hard to swallow, but it is there...
Just know you are not alone....Yes i can have a positive attitude, it's easy when the one you care for has the same attitude...or pushes you into it...we have a rule....there is no tomorrow and there is no time to be down....we live life and don't let our life live signature is this...
Life is precious...cherish every moment...

Some say it's a state of mind..i say it's constant re-enforcement....

By lurkingforacure On 2011.11.06 11:50
I am so sorry you are feeling this way, we all do at times and sometimes it lasts longer than other times. I'm one of the ones caring for young kids and yes, it does suck. But it all sucks. It would suck if our kids were older, it would suck if they were in high school, college, married, it really doesn't matter. It's just hard and we have to cope somehow, like karolinakitty said.

I don't know if this is at all possible for you, but is there any way you could get your husband out of the house for a couple of days or a weekend so you could have it to yourself? I can remember when my hubby would take our oldest to the park for a few hours, that was divine, I had the whole place to myself and could clean and organize without anyone getting in the way.

Also, would it be possible for you to try to pick up an activity that brings you some happiness? Something small, gardening, knitting, book club, walking club, something that you like that would also get you out for just a bit to see other people?

You cannot let PD rob you of your identity on top of everything else. Look in the mirror at the woman you see, and take care of her, she deserves it.

By mrsmop On 2011.11.06 12:35
It seems that this forum is really for caregivers who are able to continue to cope with the many demands and frustrations of being the caregiver for a spouse with Parkinson's disease. I am 68 yrs old and have had 4 joint replacements and surgeries on both shoulders. Neiither of the shoulder surgeries restored full functioning. Although he had an attendant to take him shopping and to different activities during the day, the remaining hours were torture for me. Constant messiness and destructiveness made me extremely upset. I ached to have the man I once knew returned to me, but knew this would not happen. His entire focus was on his PD, medications, pain issues. He was in a state of denial of any cognitive changes and many physical changes that had occurred. As some had stated in an earlier post, I felt like I was living in a black hole, and would never get out. I had thought about leaving, but felt guilty because he was the one perceived as being the sick person. I guess he sensed my frustrations, and unwillingness to be intimate with him. He thought he was Adonis, and couldn't understand my issues. He even wanted to bring women into our home (although I can't imagine who would consent other than for money.) Eventually, he decided to move out, and filed for divorce. He is now in a retirement residence, where he pays additional for a daily aide. If the facility said "assisted living" he would not have moved in. His only sister has now taken over all of his planning and needs outside of the residence. She had never offered to provide any help or support when we were together. She is very angry with me, even though he was the one who left, but she saw no other option. He has assets, and she will probably be the beneficiary of these. I used to be close with my sister and brother in law, but they now have nothing to do with me, other than when they need information. It is not easy being alone and having the full responsibility of maintaining my residence. In some ways, I feel much less stress, and have many activities during the week. I emotionally miss having a close partner with whom to share my life. I do not feel guilty re the fact that I could not be more tolerant of his behaviors. The man I loved when we married certainly is not the man he has become. There have been many good suggestions in these posts about how to make life at home more tolerable. They just didn't work for me. I couldn't take care of him because I couln't take care of myself. This is my story. Good luck to all of you caregivers who continue on. I admire every one of you.


By sunshine On 2011.11.06 13:28
Dear Poppadum
I hear your pain, confusion and sheer exhaustion and my hand and heart reach out to you. A big huge hug and a shot of loving care and inspiration sent from my home to you. I too have felt the despair you are describing and can also relate to the grandchildren absence as well. It is very painful and heart wrenching. Many times I would wake up and feel like I wanted to go to sleep forever. Somehow I kept reaching out for help and praying for a miracle. I hadn't lost all faith in life somehow as unbearable as it seemed. You are in the right place that is for sure by sharing with us because it will help to unravel the confusion that swims in the head when stressed to the max and hearts will reach out to you encircling you with caring, compassion and wisdom. From what I understand, sometimes the anti depressants can be trial and error trying to find the right fit but my goodness when it is found, life certainly becomes a whole lot easier to navigate. For me it was a total lack of sleep, worry about anything and everything because I felt like the disease had really taken over me as well as my husband. I encourage you to see your gp again until you find the antidepressant that helps you feel better without the difficult side effects. I too have gained a lot of weight but something I did find interesting is that when I made a concious effort to make my rest (sleep) a priority my weight seemed to drop some. They say that when we are stressed that the hormone cortisol? accumulates in the abdomen and encourages the accumulation of fatty cells. Keep reaching out until you find what it is will truly take care of you. I feel like I am somewhat on the other side of the desperation now and can honestly say that, when I look back, compared to where I have come to, I am so glad I was introduced to the forum for support and the antidepressants that when finally found, really helped. My personal opinion about antidepressants is on this journey with the stress we cope with due to our loved ones illness, our seratonin level is constantly being taxed, one crisis after another or one stressor after another and I now believe that I need to have this additive for myself to keep the level topped up, and my thoughts clear to walk through this life with my hubby intact, strong and a beaming light for him. I'm much happier too and seeee things from a better perspective. On the flip side I also know from the support from the kind people on this forum that life with Parkinsons is never ever really a consistant flow, much like life really, but more uncertain because of the condition. I, in the beginning, craved for certainty and some semblance of control over this disease process, because it was so chaotic and created chaos for us but now I realize it's all a process and I really need to cherish each day as new and really enjoy the moments that are good when they arrive. I hope this helps you. I really wanted to reach out to you to let you know it will be okay, keep reaching out, and by being on this forum you will receive renewed hope, valuable insights, and a more supported journey with your spouse for you. Big hugs. :)
P.S. A small respite of time to get away is invaluable. It helps you to really gain insights around how you cope, how much stress you are under and most importantly that breaks are a truly necessary prescription "for you." Not an easy task because of guilt etc.but nonetheless really really helps.

By poppadum On 2011.11.06 17:59
Thank you all sincerely for your kind words and helpful advice. I thought I was the only one struggling, thinking I must be a weakling because the majority of things I read on this forum was so upbeat and positive.
The biggest problem was that I thought I'd won the lottery when I met my husband and the 25 following years! He was everything other women could only wish for. I loved him to bits and I still do, but both he and I hate the presence of Mr. Parkinson, whom we are unable to show the door because he resides in my husband's body.

Indeed, family can be such pains in "an awkward place". None of hubby's brothers or sisters want to know us nowadays (good job they live in another country). After a lifetime of believing that my sister, my only sibling, would stick with me through thick and thin when it comes to Mum's welfare, she kicked me in the same "awkward place" about a year ago, hurting Mum badly in the process, leaving me to pick up the pieces and leaving me to deal alone with Mum's needs.
Now I understand why Dad made ME promise, and not my sister, on his very last day (30 years ago) that I would to my very best to look after Mum.
Enough of the moaning because good things too happen to us:
a young Vietnamese family who lives in our neighbourhood seems to have attached itself to us some 5 years ago, only because I noticed one day while weeding the front garden, that the lady who was walking her newborn son, seemed "lost". Having lived abroad I recognized the signs of homesickness, the longing for family support and the lack of friends. We hit it off immediately. In the meantime we have become really good friends, in fact more like family. The now 5 year old boy loves me to bits and his 2 year old sister is my godchild and the light of my life. They call us "grandma" and granddad" and they pop in and out as if they were our son, daughter and grandchildren. They've experienced hubby's PD getting worse and they just deal with it. The husband got in the habit of noticing things in our house which have broken and repairing them because his technical skills are second to none. The wife and I swap meals because they love Flemish (northern Belgian) cooking and we like the Vietnamese recipes. Preparing some extra rations while cooking is no trouble at all, and it saves us both having to cook hot meals (and the tidying afterwards) several times a week. When necessary I look after the child/ren and somehow they seem to have a calming effect on hubby, would you believe!

Some of your most strikingly encouraging sentences are going up on the fridge and in the bathroom in massive script, lest I forget!
Thank you! Thank you all!

By sunshine On 2011.11.07 12:13
I am beginning to realize the validity of the saying "you can't choose your family, but you can certainly choose your friends." I never really quite got it in years past because family was our life; however, when times get tough sometimes it is much more nurturing for us to allow others to help us out from a non biased perspective and genuinely from love with no old dynamics and history. I/we love our family dearly and some members are very loving and very supportive and they too have their lives to live and their crisis from time to time. Friends come from a less complicated place and they often choose to be there for us out of pure caring, kindness, and choice. Some have the gift of true giving and shed beautiful light upon us. They never truly replace family but together with our kind friends we can joke, laugh, and brainstorm without the dynamics and intensity of feelings that family can bring to the forefront that often invoke guilt or frustration. So great that you have the lovely family to help you out and in which you can also help out too. To me there is no better synergy than a win win like this. Hugs to you. :)

By Reflection On 2011.11.07 16:09
I’ve been trying to figure out how to respond to this thread, both to poppadum’s initial post and especially mrsmop’s, as well as an earlier thread by housemouse.

It’s hard to know what to say. I want to at least let you know you are not alone – because you, and others on this forum, have helped me immensely by letting me know I am not alone.

And no, darn it, I refuse to cede this forum only to those who are managing well, who have made it work, who look on the bright side. If anything, the rest of us need this forum even more than those folks, precisely because we are fighting a losing battle against an implacable foe who has stolen the person we used to love.
Dealing with my husband’s PD, the behaviors that were caused by his PD medications, the behaviors that might have been caused by his PD (I hope – because if that was the guy I’d married, boy did I make a big mistake), his denial of all of the above – all this has been by far the hardest thing I’ve ever had to deal with.

A gentle guy I thought I knew has turned into someone very different, someone who has inflicted grave damage on me and on our kids with no remorse, no insight, no happy ending.

The example that is popping into my mind: when he was in his “crack addict” mode, with too high doses of PD meds, he’d drive too fast, too aggressively. He would not allow me to drive – that was the male prerogative. The kids and I were terrified to say anything, to ask him to slow down – because he’d speed up even further, to show that we could not boss him around. To my everlasting shame, I allowed the kids and myself to drive with him way too long, even though we were scared, because I was even more afraid of his reaction if we refused to drive with him. I should have set a boundary, refused to let him physically endanger the kids and myself – but I didn’t.

I’m giving this example because it symbolizes to me my determination to make the family work, somehow, despite what PD was doing to him, to us. I would do anything to keep my husband engaged with the family – but one person can’t make another want to engage, and apathy is a prime non-motor symptom of PD. Lack of insight, too.

Another example: he’d come home late, often. I’d wait dinner for him. The kids would get increasingly hungry, unable to concentrate on their homework, we’d all get tense, waiting. If I had it to do over again, I’d just set a firm rule – dinner is at 7, for anyone who is home. It would have saved the nightly psychodrama.

Now, how much of our family’s problem’s were due to PD, and how much due to the affair with a married woman he managed to keep secret, in part by attributing otherwise unacceptable behavior to his PD – I don’t know. And would he have had the affair but for the impulse-control issues caused by PD meds, or the frontal lobe judgment issues caused by PD? I do know that there is no way I would have put up with, or allowed the kids to be exposed to, a lot of damaging behaviors unless I thought it was my duty to stand by my man in his time of need. He was acting like a jerk, but insofar as that was attributable to PD, it was somehow “not his fault” and I resolved to deal with it, while maintaining as normal a family as I could for the kids.
The result: we all spent years in an utterly dysfunctional situation.

This is harsh, but true. And it badly damaged not only myself, but my kids.
I have also spent way too much time trying to figure out on my own the non-motor symptoms of PD, and of PD meds. Another boundary I should have set early was that if he wanted to live with the family, we had to have access to his doctors. In private, so we could describe what was going on without fear of retribution.

Now, for those who don’t relate to what I’m describing, I’m glad for you. But if there are those who do relate, maybe this perspective can help your families avoid some of the pitfalls my family fell into.
I struggled for years with a very deep depression, not entirely resolved, but now far less severe, from the overwhelming impossibility of making it all work. Too late, I realize that my efforts were futile.
Mrsmop, my husband, like yours, has filed for divorce. Having run through his money, he wants mine. And it’s tempting to wash my hands of this mess. But if I’m not dealing with the mess, who will? His siblings have made clear they won’t step up, and he’s feuding with them in any event. He’s stopped seeing most of his old friends. The few “friends” he sees now take advantage of him economically. That leaves me, and the kids. I spent years trying to get the kids and their Dad to relate to each other, with the unfortunate outcome of making it more obvious that Dad didn’t have much interest in relating to his kids. So I’m out of that business – it’s counterproductive. One kid has pretty much stopped trying to have a relation with Dad. The other has a lot of ambivalence. She would try to help him, but having seen how my efforts to help him have sucked out my energies, my joy, my life would, I hope, set boundaries better than I ever did. Which he’ll overrun, just as he did any boundaries I tried to set.

So the best I can do for the kids, for my husband, for myself is structure a separation or divorce that will pay out over time so he’ll have enough to live on, even if his bad judgment/frontal lobe issues lead him to trust those “friends” who appear to be the impetus behind his filing for divorce, and who would love to relieve him of any settlement he may get. Sadly, it looks as though these “friends” are bailing out, as it appears they won’t get a short-term payout from any divorce. So, again, I’m left holding the bag. Is this because I have a martyr complex? I can’t let go? I’m in denial? Or is it because he really does have advanced PD, with the bad judgment, poor financial skills, etc. that come with advanced PD, and I’m trying to deal, somehow, with that reality, and protect the guy I once loved, the father of my children, a guy I have some responsibility for, even as he has renounced any responsibility to me or the kids.

So why am I still reading this forum? Because I get from other’s honesty about the challenges they are facing that I’m not crazy, that I’m dealing with a crazy situation with as much strength and grace and compassion as I can manage. There are no roadmaps, but the paths forged by others can help us find our way across this dark, uncharted land. And maybe my path can help others who follow – if only to avoid the path I have taken.

By poppadum On 2011.11.07 17:32
Not a good day, I thought, because influenza (or something similar) hit me hard today. On the other hand feeling lousy combined with hubby having disappeared to the golf club without specifying a return time made me decide that today was going to be a me-day, regardless! So I printed out all your answers to my original question, set about analyzing them meticulously and came to the conclusion that I should take all your info to heart, and this is why:

Many years ago I was in an abusive marriage which lasted 10 years because I was brought up to be a good catholic and very naive with it. My (I should say "our" but I cannot bear to use that word) eldest son was beaten regularly and on several occasions he was badly hurt (broken ribs, concussions...) but I was not allowed to take him to see a doctor. Usually I myself was in a worse state because when I was at home I would lunge like a lioness at my then husband as soon as he cast one of his "looks" (pupils growing large) on my son, knowing what was to follow. While having fallen on the floor and getting beaten up I would think "as long as you're hitting/kicking me, you're keeping off my child". How stupid could I get???

Eventually something turned a switch over in my head and I fled with my 2 boys and filed for a divorce. During court proceedings I still thought I had to play "fair" or at least what I saw as "fair" by "not fleecing" him, thus making it all the more difficult for myself and the children in times to come.

Nowadays when anyone I know well wants a divorce I warn them not to be as stupid as I was at the time. And you know what? I still AM as stupid as I was then! That's what I realized from quite a few of your answers. I have to stop making excuses for what PD does to me and mine, and I have to determine firm boundaries. I had already set some up, like, if hubby dares to get on the motorway once more, he will have the police after him because I personally will call them. He knows this and he also knows that I don't issue idle threats as he found out for the first time many years ago, and a few times since.

I've given up waiting with dinner: if he's not home, he can prepare his own, whether his hands are co-operating or not. I'm fed up of being rung at 18.10 to say he'll be home in 10 minutes and then he doesn't show up until 23.30.

Should he want to become aggressive (although he has never been aggressive neither to me nor to the boys he calls "my sons" and has also always treated them as such, with a lot of kindness and undersanding) he won't like it because I'm sure I haven't forgotten everything I learned during 4 years of Jiu Jitsu training and as I've since found out I'm not afraid to "go for it".

As for R&R, so far I stuck to gardening but today I was invited for an afternoon out with a friend next week and I didn't hesitate to say "yes!" I'll take photographs before I leave the house and again upon my return so I can make him face facts. Let him smooth-talk himself out of that one!

I'll just be a softie when I can afford to be, i.e., when I don't have to pay a price.
Well, for today I have my fighting spirit back, and it feels a heck of a lot better than just a survival spirit.

So, thank you all once again. You've been a massive help.

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