For those who care for someone with Parkinson's disease
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We went to bed at 11, but didn't fall asleep til midnight. Carl thrashed around, dreaming I would suspect, so we both were awake from 2:30-3, then awake again for the final time at 4:20. As always, he got up and took his Sinemet and came back to lie down...At 5:30 I got ready to get Nigel, when he said, "I can't go. I am too tired and nauseous." All this is leading up to this...Remember, I have only had 2 1/2 hours' sleep... When I rolled down the window to greet our SiL and Nigel, our SIL asked where Dad was...I said, "He doesn't feel well. It is getting more and more often now...He is still in bed and sick to his stomach. Looks more and more like the PD is taking over. We'll see." SIL-"Hey, don't be so pessimistic. Look on the bright side. He is still here." I said, "You simply have NO idea what is coming...none of you do. I am too tired this morning, but I DO believe this entire family needs to get their collective heads out of the sand and realize he cannot go along forever without symptoms and problems." No real ranchor, but what should I have said? I want our GROWN kids to realize their Dad is more than a source of money and fun...and that he may soon need THEM to be HIS source of strength...In the meantime, we are basically alone in this battle, as everyone expects us to be the strong ones and the ones who solve all sides of the families' problems... Sorry if this is whining or self-pity, but the hardest part of PD for me is watching our families ignore the very real symptoms and to keep expecting that things are and will be the same...I suppose what I am asking for is validation that others have families who choose to ignore PD...and make it sooooo difficult for us who live with the PWP. Jane |
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oh boy Two of sons, who live 2000 miles away, always say "Dad sounds great" when they talk to him on the phone...of course he does...He pulls up all his strength and optimism to talk on the phone.......BUT, I see him the other 23 plus hours of the day. They think he's fine.....he's not. |
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Jax, my point exactly...HIS side of the family should be well aware of the symptoms, etc...after 22 years, you would think.. Maybe I am being insensitive myself, but his side of the family always says, "He sounds great! He wants to come out here next summer." CA to NC is one awfully long trip...then, it is "Let''s drive to the beach...three hours away..." I guess my problem is that Carl is the big brother, super Dad...and for that I am grateful...but, as I see the beginnings of worsening PD, I want THEM to see it, too..and stop implying that I am exaggerating, or even, LYING about how he feels...Because, like you said Jax, he puts on a great show...and I don't... |
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| Sorry...I AM tired today...OUR kids don't have a clue, either...our oldest has her head up her..well...she keeps saying, "MJFox is doing fine and he's had it for years and years." Our son doesn't call or send email unless he needs money, and our youngest still sees this as "he will get better...he has bad days, but he will get better." I want him to be their hero, and he is...but I guess I am already tired of trying to keep everyone's spirits up and their unrealistic expectations of his future alive...Like you said, I wish he was the same, but he is NOT. |
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My husband's adult (40 & 35) children sound like the way you are describing yours. My husband has never been a generous man and it stresses him greatly when these children ask him for money and expect him to drive a couple of hours to deliver it to them or to request it of him. The only thing worse is being a blended family - I really can't say anything - when I do it just causes more heartache all around. These children will eventually have their hearts broken when their dad becomes undeniably ill and no doubt will regret the lost opportunities. I understand your frustration and sadness, but sometimes these things have to play out on their own. As their mom, no doubt they'll become more open to the situation when the symptoms begin to worsen and you all can be mutually supportive. I'm afraid my step-kids and I won't be able to comfort each other as you'll at some point be able to do with your children. We're all in for heartache, let's hope we have many good days before then. |
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Welcome to my world. Not too long ago my husband's mom called and asked me how he was doing and when I told her "not well", she said "well why is that, what is going on?" I nearly dropped the phone. When I reminded her "Parkinson's is a progressive disease and, well, it's progressing" she changed the subject. Made me crazy. I cannot imagine acting like that if one of my kids were sick with PD or anything else. I would be crawling on bloody knees to get to them to help in any way I could. She doesn't ask me about him anymore, but will call to tell us we can call her anytime or come over to visit. I feel it is selfish and unrealistic to expect me to come sit and chit chat with her and bring the grandkids when I am up to my eyeballs in taking care of her son, the house, paying all the bills, working, helping with homework and driving kids everywhere they need to go, and on and on and on. Not once has she ever offered to have a maid come help me for a day, have a meal made for our family and delivered, or do anything that would give me a break of any kind. She has the means to do so, I just don't think it occurs to her to offer. When I had our kids, she never came to help me with a newborn or laundry or cooking or anything, not even for a day, and she lives less than five miles away. I find it so sad. What should be one of the greatest sources of comfort in times of stress, the family, can actually make things much harder. You're not alone, there are, unfortunately, many of us walking in your shoes. |
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| Boy, it sounds like we all sing the same song, in different states, in different keys, with different melodies. SIL needs a reality check. Ask him to spend 24 hours with you and see what you do and how little you sleep. Be sure he is awake when you empty the urinal, get the snack to ward off nausea, give the pills, cover his legs cold from poor circulation and hold the water up to his lips because his pills are "off" and he cannot lift the glass. Then let him wash all three sets of sheets, dirtied in one night, and the clothes that are odoriferous, and have breakfast ready at. 6:20 am. He will see what "all in a nights work" really means. But on the bright side, let him sit and work a puzzle with him, and see how happy PWP can be with company, doing "small" things. |
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I seem to have hit a chord here. I guess I came on strong today, but being tired does that, doesn't it? I often wonder if venting like this helps us...or makes it worse? I choose to think it helps...it did me! Hugs, Jane |
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I have found my grown sons don't want to talk about it, even though they know. I had to have one of them take my husband to his heart therapy the other day and they said he came out feeling good and doing well. When I tell them how tired he is on most days after therapy they think I'm just being pessimistic. It is hard for them to realize how quickly his energy levels change. Maybe our families are just trying to be upbeat to help us. My kids would do anything for me and their dad but they don't get to see the full picture either. On a positive note, they have taken me to the side and told me they know the sacrifice I am making to take care of their dad. His brothers and sisters also will take time to ask about how I'm doing when they inquire about his health. I think our relatives know, they just don't quite know how to approach it and deal with it. Blessings. |
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| Yes...You've definitely hit a chord....Sadly we had a friend who had recently lost his wife to cancer...and he commented that with the diagnosis of a serious disease.."well prepare to lose about half of your friends" cause they just can't or don't want to deal with it. We've found this to be true. It's a very lonely battle. And the people that are empathetic ask well, why don't you get his son to help you? Am I supposed to call his son to help him get dressed on occasion? And whoever said she hears "well he looks good" on that 1 day they see her PWP....really strikes a chord with me as we see the other days when he struggles....I don't mean to whine either but this is difficult and my PWP was only diagnosed a few years back. I don't know how you guys do it. Your strength and honesty inspires me... |
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Jane, This summer we had a week vacation with two his daughters. They were good and helpful with their dad. We spent time in the pool and everyone was watchful, and having a good time. The middle of our last full day there, he just kind of crashed. He was in the pool and luckily everyone was close enough to catch him and get him out. He just sat there unresponsive basically. His daughters thought he was having a stroke. I said unfortunately he gets this way a lot when he is tired. They took him up to bed and that was an education in itself, especially since he was so out of it. They thanked me profusely for taking care of their dad. We also had a weekend with his siblings and their spouses. His two younger brothers maybe see him once a year at Christmas. When they saw how hard it was to get him in and out of the car and just walking, they were kinda shocked. Then when they realized the extent of his dementia, they really had their eyes opened. Are they any help or do they come visit? No. But at least now they know how it is. |
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Interesting posts....and helpful, too Our third son - and our daughter - see us often........and they know what goes on.... It's hard on them to see their once very strong, bright dad go through what he's going through.. And they do say they don't know how I do what I do.....and keep it all together. They can't seem to convince our other sons, though....that's ok....it is what it is..... Maybe denial helps them get through their own fears or anxiety they have - even about their own health. Who knows? Life's too short to worry about things we have no control over...so, I try not to worry about it... We all keep on keepin' on, right? |
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Looks like we all agree that the attitudes of the family can weigh us down, but we have to rise above it, don't we? After all, this disease takes a great deal away from everyone it touches, and, of course, our PWP the most. I think what we all feel, too, is the need for our families and friends to acknowledge that PD requires a great deal from us and that needs to be validated. We aren't asking for awards or praise, just simply accept and acknowledge that this is not a simple diseases to live with. We are not putting our needs above those of our PWP, because our needs are different. It would be quite a different story if the public really understood the ins and outs of PD and for that matter, caregiving. As a general rule, we all acknowledge that persons with other diseases need help and so do their caregivers, so why don't we do the same for PD caregivers? I think a lot of the problems we all have are ones which are bearable for most days, but when we are exhausted, are difficult to face. It is then that we come here and post...For anyone reading our posts, please understand...we all love our PWP, and we all know that their needs always come to the forefront...we just get tired. Hugs |
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| We don't have children, and we have no family around, but I can relate completely to what you're all saying. I also hate the "Why? What's going on with him?" NO ONE understands Parkinson's unless they live with it as a patient or caregiver. I want blunt honesty, especially from medical personnel. I think your response to your children was perfect - I totally understand the need to see to it that the people in your family realize the truth of disease instead of trying to hide their heads in the sand. |
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Well, today is yet another really bad day. I love this man with all my heart, but I have no way of really helping him when he is like this. He is listless, his tremors are ramped up, he isn't eating, and he, sadly, didn't walk today for the first time in six weeks...I am upstairs, heading down to lie down with him on the floor...He lies on the floor when his back bothers him and he cannot relax because of the tremors. We are going to watch "Stand Up to Cancer", as it has great meaning to our family, but all the while, my heart is with my husband...Like Al once said, PD rears its ugly head when we least expect it and it is scary because each time a PWP has some kind of traumatic incident or change, we all wonder if this is a permanent alteration. Fingers crossed that tomorrow will be a better day...Always hopeful, Hugs and have a good night and better weekend. Jane Al, if you are reading this, thank you for being so positive...many times you have no idea how your words come back to me...we don't always agree with verbage, but we both know what it takes to get through this and you, more than me, are a beacon...I hope your knowledge is gleaned by a lot of visitors to this site...I know that I appreciate you...Love. |
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Jane, I am so sorry that you and your husband are having a few really difficult days. I hope he gets some good rest and perks up soon. This disease is so up and down we never know what to expect. As far as families go.....of the 5 grown kids 44-49 some get it, some ignore it and one or two are extremely helpful. However no one sees the whole picture..only parts of days. If they only knew what really goes on here sometimes in the middle of the night or on really tough days I frankly don't know if that would make a difference. As far as friends go they ask about him but don't really do what I would like. For instance if they just stopped by for a short visit from time to time. Just come by with lunch or take a walk. I guess everyone has their own lives to live. Unless they are in a similar situation they could never get it and probably don't want to. I am starting to resent some longtime friends for not trying harder and caring. So off to bed who knows what this night will bring. |
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Umajane, you are right about friends. I feel the same way. Just a short visit would do so much to lift our spirits. Jane, make sure Carl doesn't have a UTI or a fever. When Mike gets really weak and listless like that I take his temperature often to make sure. Sometimes he's just having a bad day, but I've learned the hard way how those infections can sneak up on you. Also, hydration is important. I just can't seem to get Mike to drink as much water as I think he needs though. Hope things get better for you and Carl. |
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Carman, I am at a loss...Carl did have a fever yesterday, in fact, he had a very red face...He wouldn't take anything and wouldn't call the doctor...So, I stayed up most of the night watching him sleep (HE slept off and on)..He finally moved to the recliner and slept better after I turned on the ceiling fan. Today was better and I made a fresh batch of tea, so he drank more...drank several bottles of water, too...I told him he looked and acted dehydrated...He still isn't up to par, but he did eat some. Another day down...I am so glad he goes to the neuro on the 30th... I am wondering, other than a problem with his meds, is it possible that he is overly anxious because in less than ten days we will see our oldest daughter, who hasn't seen him in two years...he looks radically different and his tremors are pronounced... Does anxiety, even if he is taking meds for it, cause a PWP to become ill and ramp up the tremors? I know anxiety isn't good, but this seems to be a bad case of it...Just throwing it out there...Jane |
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| Stress sends PD symptoms through the roof. This is one of the few things I have learned that is common in all PWP, despite how different their other PD symptoms. |
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Jane, yes, yes, yes Any kind of emotional stress or anxiety make my husband's symptoms flare...really badly, sometimes... Especially anything relating to a "family matter".......just can't handle it. So, a lot of the times, I don't tell him certain things........ Other times, I sugar coat situations for him.... When one of our sons was coming here for a visit recently, my husband could hardly function.....I think he started worrying about having our son see him at his "worst"...... All went well, though... I hope this passes for you very quickly.. |
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| Yes I totally agree. Stress is difficult for all of us but it makes everything worse will our PWP. I try to keep things scheduled and calm but life gets in the way sometimes. The main thing is not to rush him and for me not to get angry. I tend to be anxious so I have to learn to control that for both of us. |
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| Jane - I hope Carl is feeling better & we all know the future plans can certainly be stressful for a PWP. But that shouldn't cause a fever. Please try to get a urine culture, or some other test done depending on symptoms, if he has a fever. From what I've read, a UTI can cause serious issues. Maybe a Doc-In-the Box (urgent care stand alone clinic) could do a UA to avoid appointments, and making a big deal out of it. If he does have an infection then his usual team can treat. |
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Yes, I agree about the fever. If it's a UTI it probably not going away on its own, and they need a urine culture to see what kind of antibiotic to give. If it's not, then at least Tylenol and lots of fluids. I found out the hard way that the prompt care clinic is the way to go. |
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| Thank you for the concern...I was not sure, still am not, what was causing this latest event. Today, however, seems to be a new day...He went for his walk, is working on Nigel's cake stand, and seems to have slept better...no fever. I appreciate your responses and should it happen again, I feel better knowing what to do...I WILL bring this up at the end of the month. Hugs, Jane |
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Glad Carl is doing better. Hugs |
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| Jane...I was worried about you and Carl...I'm glad things are better |