For those who care for someone with Parkinson's disease
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| My husband was diagnosed with PD about 10 yrs ago, and had DBS/STN in Nov 2008. What it helped most was his mobility. I've written posts about messiness, forgetfulness and disorganization, and about my frustrations in dealing with such. I read about people here with PD who are so much more disabled and about their wonderful caregivers. My questions are: Do all Parkinsonians eventually go through this decline? If so, is there a time-frame? Does DBS prevent some of the deterioration.? How does one plan for the future? I feel very out of control of our lives and at the complete mercy of this disease. Would appreciate comments from others who have been through the experience. Is 10 yrs into Parkinson's still very early?......Thanks, mrsmop |
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The most important thing to remember about PD is there are no rules, guidelines or specific times. Everyone is different. Some get dementia, some don't. Some live fairly normal lives for many years others experience a rapid decline. I am a RN and I was a caregiver for my PD husband who had the disease for 18 yrs - he did well for 14 or 15 of those years. Still practiced medicine, enjoyed social outings, etc. He elected to have DBS surgery and from that point on there was a rapid decline. No relief from the surgey at all. Not blaming anyone just luck of the draw. It seems that if there was a risk listed he developed it. PD is a progressive, neurological, uncurable disease. From what I have learned in nursing and witnessed on my own the end stages always involve a decline in function. DBS does not prevent the progression of the disease or the deterioration; however it may temporarily decrease the symptoms and result in less medication. For me the most comfort I got was knowing that all of our affairs were in order - Living Will, POA, Will, etc. I highly recommend this because when the time comes when you need it, it is too late. Get it done, forget about it and if you don't need it - terrific. Unfortunately PD does take control of our lives and we are somewhat at the mercy of this terrible disease. You can still have a very happy life but you have to adapt. Plan outings around med schedule, be prepared to cancel things at the last minute, do as much as you can and forget about the small stuff. A messy house is not the worst things in the world and I always found the dirt and mess would wait for me to get around to it. In many instances you just have to take over things like laundry, finances, yard work or anything else that may result from the forgetfullness. Doing it yourself and knowing that it is done reduces stress. Those of us who have been dealt this hand learn that many of the things we thought were important just aren't. Your priorites change and in the process you also change. Stay with us. |
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Annwood is exactly right, this is a "designer disease", it's different for everyone so there is no way to predict the timing, schedule or pattern of the progression. My husband was diagnosed in 2002 although he had symptoms before that. The dementia started before the physical symptoms so we've been dealing with that from the get go. Within a year of being diagnosed he had to retire because he was not able, physically or cognitively, to perform his job. About three and a half years ago he had a significant decline in function and it became too difficult and stressful to work and take care of him so I decided to retire early. This past summer he had another decline and now here we are, eight years into his diagnosis and he is in the advanced stages. You can contrast that to the progression that annwood describes for her husband and see the variability. In our local Parkinson's support group there are people who have had the disease for many many years and are still doing reasonably well. One man who was 18 years into Parkinson's and still quite mobile and independent just died from a heart attack. So you just never know what is going to happen or when. I believe that for the most part the people who are posting on this board are dealing with the advanced stages. People whose loved one is doing well with Parkinson's probably are not on the internet doing searches for caregiver support and landing here. Parkinson's does take over your life and if you let it, it will consume you. It has been a huge struggle for me to find a balance between taking care of my husband, the house, the finances, and everything else that needs to be done and still hang on to me, to not let myself disappear. I think I am getting better at that, but there are moments. I agree with annwood that it is important to make sure that you have your paperwork in order, not just for your husband but also for yourself as there is always the chance that something will happen to you first. Both my husband and I have wills, DNR's and Power of Attorney in place. In addition, I have written out information, suggestions and instructions for the person who would take responsibility for my husband should something happen to me. There are so many things that we take for granted, even seemingly simple things like the doctor's name and phone number, that other people might not know. Because my husband has dementia I also try not to let those times when he is thinking more clearly slip away. In those moments we have had many many conversations about life, death, love, hopes, dreams and fears that we probably should have had a long time ago but didn't. This disease changes your perspective; it can make you better or it can make you worse, maybe a little of both. One thing it surely does is land you squarely in reality. We have all felt what you are feeling, we have all asked the questions you are asking and we are all here for each other. Take care. |
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Emma, you and I are on about the same time table. My husband was diagnosed in 2002 with PD. At his first neurology appointment he told him he was having problems with his memory. He had started a tremor about Aug. 2001. I would say he is also in advanced stage. Some days he barely get enough mobility to get out of his wheelchair. Robert is 58. Lorraine |
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| I guess there is no way to determine how the PD will progress. It is the uncertainty that is so frustrating to me. Yes, you can do your paper-work and try to plan financially, but you can't plan for the unknown. Do we look at the glass as half full or half empty? Most of the caregivers who post here are somehow coping. Have there ever been posts from those who are not coping well? |
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mrsmop, yes there have been and will be posts from people not coping well, We all have vented from time to time here, that's also a function of this forum to be able to get sh*t off our chest so we can go on. The uncertainty is very frustrating to both the caregiver/partner and patient alike. If I may, try to train yourself to view the glass as half full, otherwise this disease will drag you down into places that are hard to recover from. Depression is very real with P.D. both to patients and our caregivers. Enjoy every "good" minute you can and try not to sweat the smaller stuff. One has to try to remember caregiving is trying to ease the load and lighten the burden. We can't cure, make it all go away or all better. All we can do is comfort, help and console and consul. It's a tough, tough situation. And no you can't plan for the unknown all we can do is adapt to the ever changing problems as they are presented. Keep posting, We're all in this together and will help you however we can. As to progression? Like it is said everyone's different, I'm a patient living with Parkinson's Disease, I was diagnosed in 1986 shortly before my 34th birthday. Take care, best of luck and hang in there. |
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Well, I wouldn't say I am coping. "Coping" for me can be an hour to hour or day to day, etc... thing. Yes, I have all the paper stuff done, have some help, get out some, and still all of this is still extremely frustrating, depressing, lonely, etc. However, I am learning to live in the moment. I believe it has helped me settle down and accept the lack of control I have or my husb has. Help doesn't show up, Drs. can be difficult, family live on a different planet(mia), and it goes on and on. My husb is on his 20th year with the last two being the toughest. He also has dementia. I have to say that since I have accepted living in the moment I seem to cope better. Stepping back from all of it sometimes helps. My husb has and has done most of things you described. That doesn't make your experience any less difficult. Deep down I know there is plenty yet to come for both of us. When my anxiety gets out of control, I take ativan and it does calm me down immediately. I also have been focusing on short outings for my husb that are enjoyable for both of us. I know for a fact that most people in this situation are not coping all the time. I am one of them and I'm sorry for not communicating more. |
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Mrsmop, I can't add too much to what everyone else has said. I am new to this disease and actually just yesterday we got the "final" diagnosis from his regular neuro and the movement disorder clinic neuro. I use "final" because ya just never know with this disease as i have come to find out from all these wonderful people. The "final" diagnosis now is DLB, a parkinson's plus disorder. They consulted and found this to be the answer. Now. like i said, i'm new at this. First diagnosis of Parkinsons was just a little over a year ago. He had a very rapid decline in 6 months but has leveld off for the last 6 months. Adding a few things along the way like melatonin for sleeping at night, ibuprofen for severe pain and soreness, upping doses of Requip and now having Requip XL instead, He was just given Aricept for the dementia because of his rapid decline in that area. My guy is 53. Today we discussed the DLB, both of us are very analytical and want facts, so we both have done the research, before and after the daignosis. As we both read about the symptoms, side effects of drugs and mortality rate. We have decided to go for the gusto. According to the Mayo Clinic, his life expectancy is maybe 5 -7 years after diagnosis, BUT, as read into farther in their assessment, they say 6 -12, then even farther into it they say could be 12 -20 years. So what do you do? Do you sit and wait, 5, 10, 15, or 20years to die or do you live? Do you take hold of this disease and let it run your life from this point forward, or do you say heck, i may die soon but i'm going to live now. We are realists in the sense that we know we have a very hard road ahead, because even this past year has been hard. If he gets so bad, that we have to stop "living" then so be it, but we will cross that river when we come to it. We are perpared, living will, DNR, will, i already have POA and the attorney knows that if he becomes incompetent i am to be his guardian, or conservator or whatever it is legally they call it. Now that he will get his disability and back "pay" for 3 years, we are going to add handicapped ramps to our home and shop, so when the time comes we are ready. He walks with a cane now and could walk with a cane for the next 10 years. We don't know. I've suggested to him a scooter to help when we go shopping and his response is "Absolutely not". Pride? probably but he feels he is mobile enough with out it. I also thought about the facts about PD and PD plus. Most Pder's with the worst of the worse seem to be at least 60 or older. SO i said, well if you get your diagnosis at 60, and have the life expectancy of 6 - 12 years that makes you about 72 on the long end. So he's 53 add 12 and get 65. Still not old but better then 58. I take all the facts and put them in a file in my mind. I know what to expect but when is a different story. There is no way to predict what may come or when. I've read about the stages and just can't follow them myself. They're not really well defined and have so many gray areas that it still keeps you guessing. Why class anyone if it's not necessary? We live in the moment, we have only been together 6 years and feel that we need to do as much as we can now for we don't know what the future holds. We will be able to take some trips now, before it's not possible, AND, we don't have to hurry those trips up. We don't have to be back to work, or be here for children, so we are blessed. We can take a normal 2 day trip we took, 5 years ago and stretch it to 5 if we have to. He can't drive the 18 hours straight he did just about a year and a half ago on our way back from Missouri, but we can still take that trip and now, he's even willing to let me help with the driving. We can stretch that trip out to where it is comfortable for him. Dining out is a challenge as the meds cause such nausea but we can make snadwhiches and stuff for trips. The biggest thing is to "cope", be willing to adjust, and find what works for you. Messy houses, bathroom accidents, clogged toilets and all the rest of those little annoyances are just that. Little thorns in our side to keep us on our toes. Pick your battles, but remember there still may be bigger ones and both you , as caregiver, and him as patient need to keep your dignities in check and your love evermore.......... |
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| mrsmop, I know that I already replied to your original post, but I hear the desperation in your voice and I just want to assure you that most of us who have been at this for a while, as you have, are probably not coping real well. As caregivermary said, it's hour to hour, day to day. After a while the physical care, the uncertainty, the stress of dealing with everything, even the little stuff, piles up and sometimes the whole becomes greater than the sum of the parts. We go on because we must and we do the best we can. I think that karolinakitty has the right attitude about grabbing life while you can and doing/enjoying as much as you can while you are able. We did that and I'm glad we did, but we are past that now and everything is much harder for both of us. I have gained some perspective and become more patient as time goes on so I am coping differently, but probably not well. You are not alone. |
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| My husband, pd for 17 years did pretty well for 14-15 years. the last two have been tough and since Aug of 09, a real roller coaster ride. His decline has been dramatic both physical and mental. He is totally dependent for all transfers, can't stand alone at all and delusional on any given day. I try to focus on each new day, one day at a time. If I can enjoy something, great. |
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We are in the end stages now and I have put my husband in a nursing home. I started writing down my thoughts yesterday and want to share them with all of you. I know we all are in this together and you will all understand. I sit on the hospital bed across from my husband of 40 years who is slumped over in a wheel chair and asleep at last. He has had a rough couple of days suffering from bowl issues that go along with Parkinson’s disease. It is not easy for either of us to be here and certainly not something either of us would have thought possible 40 years ago when we fell in love. Thank God that we don’t know what lies ahead, if we did, there would never be a future Looking at him now, I remember the man he was, or try to anyway. It’s hard sometimes to even love this man. He isn’t the husband I married and yet he is, sometimes he knows it’s me, other times he doesn’t. A lot of blank stares and imaginary conversations with hallucinations. There is no give and take in this relationship anymore, it’s all give on my part, and take too, a lot of pain and frustration. There are no more tender looks and sweet hand holding, no more strong arms and gentle kisses telling me it’s going to be alright. I have lost my lover and best friend to this monster disease, it has robbed me of my life and my sweet love. I rail against it, I wail in my heart and I long to have him back the way he was, but I can’t, and so I just plod on, taking it minute by minute, waiting for death to come and spare us all this suffering, but when I think of him actually dying, my heart shatters and I can’t stand the thought of losing him. I am being shredded to bits and tossed around in a flood of emotions, wanting it to be over, but not wanting it to be. So I manage to stay afloat, I visit with him for a while and then leave because it becomes too overwhelming. I’ll come through on the other side of it all but I will never say “I’m grateful for this experience because it has made me a better person”. I would change this in a heartbeat if I could. People tell me I’m a saint, well, that’s hooey, and besides, the road to sainthood is too hard and I would take a detour if I could. So, I continue to wait, and watch as each day he dies a little more and I hurt a bit less. Not easy, not easy, so not easy . I didn’t volunteer for this job of being a care giver, and it’s not something I want to do but somehow I manage to muddle through. I have a family that loves me and supports me, friends that keep me from falling into the abyss and an inner voice that gives me courage to face the day. Today they told me they are going to do a swallow study on him, if he doesn’t pass, that means I will have to battle with them not to put in a feeding tube. He doesn’t want to eat anymore but doesn’t have the strength to resist the nurses when they insist. I ache in my soul and want to scream out and punch the world for this unbearable hurt. I am thinking about calling Hospice and hoping to get some advice from them. There are no rules for this game, and everyone loses. |
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I am so sorry Deflo for what you are going through. My heart goes out to you. As you say, we don't want to know the future as we couldn't take it. Now we just take one day at a time. My husband was diagnosed at 59 years and now is 61, so he was fairly young. He is in the early stages and fortunately retired, so he doesn't have to worry about working. He tires easily so we are in the process of moving to a lower maintance house and looking forward to the change. We thought we would move now when he is able, so we can enjoy things and not worry about yard work, etc. Anyway, that's enough about me, but I just wanted to let you know that someone is thinking of you and keeping you in their prayers. Lynnie |
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| Deflo - So very well said. As you probably know I lost my husband 2 yrs ago under quite similar circumstances. I really do feel your pain and remember all of those feelings. You will make it through this but one wonders why anyone ever has to experience this level of pain. Thinking of you. |
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| Thank you all for being here, I haven't posted a lot but I have been here, reading and learning and trying to prepare myself for what is coming ahead. They admitted my husband last night with asperation pneumonia. He is weak and fighting even the iv. Here is some information for all of us, not all hospitals will accept your living will or dnr's, I had copies with me and the nurse told me that the attending dr has to sign off on it and I have to sign the hospitals dnr. She was terrific and helped me through all the bs. He is having the swallow study this morning and she asked about the feeding tube, I told her no way and she agreed with me. It's all about waiting right now and time seems to have stopped for me. I ask you all to keep us in your prayers. Thanks. |
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deflo: You are in our prayers. I so fear what you are experiencing - I know it is coming. Like a dark shadow creeping into our lives a little at a time. Thank you for your insightful, honest words. You put into words what so many of us feel each day. I so many times feel an anxiety attack welling up inside - fear of the unknown.....fear of the inability to affect it in any way....... I am like you - I hate the pain, the loss of my lover and best friend and all the good parts of our 28+ years of marriage. Please take care of YOU now also. You can't be there for your spouse if you don't take some time for yourself. Feel the group HUG we all send to you. Keep writing. Keep sharing. We are all here for you. |
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| Thanks again for all your support and kind words, we are still in a wait and see mode. He passed his swallow study, thank God, but he is on pudding thick. He is losing weight, 10lbs in one week. He has rebounded with the antibiotics but he has no idea what is going on or where he is. He knows me but thinks he's at a resort in Mexico and doean't like the service and wants to move to someplace else. Poor soul, but I guess it's better than knowing you are in a hosptial. He is like a cat with nine lives, this isn't tje first time he's come back from the brink of death, and it takes an emotional toll on all of us. First I find myself planning funeral arrangements and getting ready for the worst, then I walk in the room and he smiles a big smile and looks great and my heart leaps with joy, but I know it's just prolonging the inevitable and so we wait somemore. This disease truly is the long goodbye. |