For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic Does anyone else out there ever feel hopeless? Go to previous topic Go to next topic Go to higher level

By dkleinert On 2009.10.01 23:06
Lately it seems that I am sad and or depressed every day. I truly can't keep up with everything. I don't have the finances to pay for help or to put my husband in an assisted living situation. I work 3 jobs. I can't pay all the drug, doctor and hospital co-pays even working all of my part-time jobs...... Joe is getting worse, not better (of course with PD). I feel so alone. Don't have anyone but you to talk to - no one locally really understands. I have given up talking to anyone about our situation.....they want to help with all these wonderful solutions.....all of which I have thought of or tried - and I know they mean well, really....just they don't get it or can't get it - how it really is day in day out, hour by hour.....I am late for everything. I am sometimes impatient with my husband, and it is not his fault he is so slow to do anything - he hates it too. His memory is so spotty and unpredictable.....For the first time in my 62 years my house is dirty and needs cleaning badly - no time. For the first time in over 50 years all of my flowerbeds were devoid of Spring and now Fall and Winter flowers. I have not exercised (and I love to racewalk by the way) in months. I get up and it never stops. I go to bed at 1 - 3am, because after I get home from work (9:30pm) there is still so much to do before the next day. I have to do all things for my husband now from putting in his contacts to bathing and dressing and undressing to cooking, sterizing his catheters because we cannot afford the co-pay for the disposables......keep up with everything, be accountable for everything.....Do any of you miss having someone to lean on? Someone to share concerns and responsibilities with? (I am blessed with all of you, however, and know it). Someone to say you look "pretty today", "I love you", "I want to take you to dinner and a movie", "Can I help you with anything?", "What's wrong - you look sad?", "Let's go to the beach for the weekend", "Let's go dancing", "what did you think about XXXX that I read in the New York Times today?"......I so miss having the intimacy PD takes away, not just the sex, but the physical closeness and warmth.....I just don't know know how to cope with it all anymore. The impoverishing of PD, both financially and emotionally. I don't need an antidepressant because these issues will still be there, no pill can take them away, just make me dull and unable to keep up even to cope for the long haul when it is your husband who is being taken away by PD? Thank you for listening.....sorry to be such a whinny baby......Hugs to all of you.

By annwood On 2009.10.01 23:40
You are not being whinny - this is HARD!! I don't mean to downplay what you are feeling but instead let you know that most PD caregivers are feeling that way much of the time. Exhusted, frustrated, isolated and very sad. I could have written your post 2 yrs ago. You start to feel as if it will never end and then at the same time you are afraid it will. You are correct in stating that nobody seems to understand and in time they just aren't there anymore. Much of what you are doing is mourning the slow loss of your husband and probably feeling pretty helpless at the same time. Know that what you are doing for your husband is a wonderful thing and not everyone can do it. I wouldn't feel bad about the frustration and anger directed at him (we all have done it) he knows you love him and that you are doing all you can.

Don't worry about the house and flower beds. I have found that the dirt will wait for you - it never goes away on it's own and those flower beds will be there and will give you much pleasure later. There will be an end to this and you will have a life again - I promise.

I would take issue with the antidepressant. You are definitely exhibiting signs of depression and they will help. I had to start on them 2 yrs before my husband died because I just sat and cried most of the time. My physician prescribed Lexapro and it worked wonders. It takes about 3 wks to get an adequate blood level. It did not make be sleepy, druggy or slow - it just made the tears go away.

All of us here on the forum are here for you. We do understand.

By deedeesdaughter On 2009.10.01 23:42
I just want to post a hug to you. I am so sorry. I am just the daughter of a PD patient, who happens to be my dad. My mom takes care of him with no help as well...and she is tired, and it is taking its toll on her too. I wish I could come and give you a big hug in person......unless you know exactly what PD does, people just dont understands just how hard it is to see your loved one suffer. Please know, that in some tiny town in Idaho.....someone is saying a prayer for you and your husband tonight, and for many nights to follow. Big gentle hugs to you.....Mary Ann

By LOHENGR1N On 2009.10.01 23:58
dkleinert, in all honesty I think I can say for most of Us well into the battle with Parkinson's Yes. We have and do feel hopeless at times. It's only human to feel lost, helpless and hopeless with this disease! At times the loneliness is overwhelming! You are so right, no one truly understands. We patients cannot understand all that our caregivers go through nor can caregivers understand completely how Parkinson's slowly strips Us from control of our bodies and then our minds in it's unrelenting progression. Somehow We muddle through and on.

A whiney crybaby? We all know from time to time you just have to write it out to get it out and off your chest so you can go on. (How many of us have vented and ranted in the forum here because it seemed if we didn't we'd explode? Anyone thinking you're a crybaby well let me get a hold of them and give them a good shaking! Parkinson's pun intended!)

I hope it helped you a bit to just type the post out, We understand where it comes from. Vent or rant whenever you need. We're all here for You anyway and time We can be. Take care, best of luck and hang in there.

By Emma On 2009.10.02 06:12
My heart goes out to you. I know exactly how you feel. You are so right, unless someone is living with this there is no way they can understand. I too long to have "normal" moments with my husband. Sometimes I see couples who are our age, and older, and I'm jealous. Just watching someone pull into a parking space, the husband driving, and hop out of the car makes me sad. Seeing people talking and laughing and having normal conversations breaks my heart. What I would give for just one day like that. We don't have partners anymore and we grieve for the loss. I understand what you are saying about the dirty house too. In the big picture I guess it's not important, but I'm sick of dishes in the sink, laundry not done, goop on the floor, etc. My home was always my sanctuary, now it feels like a prison sometimes, and a filthy one at that. My dream in life is to have someone take my husband just for the day so that I can clean, rest and enjoy being alone in my house for a few hours. Reading your postings on this board I have always had a special place in my heart for you because I know that you are still working and I honestly don't know how you do it, I can't imagine the stress and pressure. Don't chastise yourself for losing patience at times. We weren't saints before this disease came into our lives and we're not saints now. We're human and we're doing the best we can. All of this, the emotional, physical and financial toll is just so much to bear and we have no one to say "it will be alright, or I'll do that, or don't worry, we'll figure it out". This is a very lonely job we have.

Interestingly, my biggest support and listening ear has been my personal physician. I'm blessed to have her. I actually get more helpful advice and information about Parkinson's from her than I do from my husbands doctors. She actually understands caregiver stress and spends time talking to me about it. She has been encouraging me to start on an antidepressant and so far I have resisted for some reason. It's probably time to reconsider because like you, I feel hopeless much of the time. Last week when I was in getting my flu shot she said something that has stuck with me. She said "Em, you can help your husband but you can't save him, you need to save yourself". Maybe an antidepressant would be the first step in doing that.

Please know that you are not alone.

By Mary On 2009.10.02 15:32
dkleinert, I too would like to be able to give you a hug. I can feel your pain and know the feeling of exhaustion and knowing you have to get up tomorrow and do it all over again. Unless someone has been a caregiver, they CAN'T understand what we are going through. I hope you can catch your breath soon somehow. When I used to post, like yours, I was told I need to find balance in my life again. Well, I could not do that caring for Dad. It just wasn't possible. I too envied others I saw laughing, visiting, leaving on vacation, etc. I was tired down to my soul 24/7. I hated and still hate when people tell me how wonderful I was for caring for Dad. I NEVER felt wonderful because I didn't love doing it. You may reach a point where you should consider nursing home care. I just placed my Dad in a Veterans Home on Wednesday. It was the hardest thing I did other than spending a night with him in the hospital when I thought he was dying. Hugs and blessings to you, Mary

By karolinakitty On 2009.10.02 18:28
I haven't had to deal with being the caregiver a long time. My Jim was only "diagnosed" in January, but the disease has progressed so fast i feel just as lost as you..
It's amazing to me how people "disappear" from your lives when someone is struck with a disease.... Jim and i had done some tournament catfishing across the country and met what we thought were these wonderful people. We opened our home to many, and took them fishing, lodged them and fed them at no expense to them. Now, in our time of need, dealing with the docs, paying the bills for medical care and so many other things it's amazing how no one is around. Some have said,"If you need anything just let us know" Well, i let some know what i needed and they all disappeared. Won't answer emails or phonecalls and just plain ignore us. We just had 2 friends of Jim, who happened to be in Myrtle beach this week stop by and visit. The one just cried his eyes out to me.. He was so sad to see my Jim in the condition he is now in. Jim asked me later why he seemed to have been crying.. We are direct with each other and i told him why.. He still doesn't understand that although he doesn't think he's any different, other than being slow and tired, how he looks to those who haven't seen him since Januarysee the abrupt change....
We have decided between us that we must keep each other from getting depressed. We laugh about things that he does and try and keep the stiff upper lip. Somtimes though i too feel like i just want one day to sit in a motel with no tv, no phone, just me and no one else.... just so i can cry it out or something. It's so hard to watch someone whom you love, disintegrate before your eyes. I know that sounds harsh too but that's what i feel.... I have read so many posts here to keep me on the level and all of you have helped so much with your insights. You are truly a blessed bunch of folks to be able to share all this with those of us just coming aboard.... When you have family and friends that just go away and you're left alone to work it out yourself, at least us "newbies" have all of you to lean on and vent to when we get upset with ourselves and our loved ones....
I feel bad for those who don't know about this sight and are out there really alone and hard it must be.....
Gram always told me and i still keep it in mind .." there is always someone out there worse off than you" That little saying in my mind reminds me of how blessed i am to even have this opportunity to read ya'll posts and and help me through my days........Love ya all and thanx from me too for all your support and insights...

By dkleinert On 2009.10.02 23:58
Annwood, deedeesdaughter, LOHENGRIN, Emma, Mary and Karolinkitty: Oh, my gosh - I am writing this as tears of feeling so blessed by all of you roll down my cheeks. You are incredible! I didn't have time to check this site last night, as I arrived home way too late from work, and had so much to do before bed.....tonight, I read all of your awesome posts. THANK YOU, for your caring, love and support - I know you know - but it means soooo much to me. You are all my oasis in the storm, truly. THANK YOU for being vulnerable, transparent and honest - it is lifesaving for me. I wish I could go to the doctor for an antidepressant after reading these posts, but we dropped my health insurance this year and I only have catastrophic coverage because we had to increase my husband's coverage so we would not end up in the medication "donut hole" as we did in September last year and then not be able to continue his drugs. Last year we had to borrow $5K to pay for his drugs for the last 4 months of the year, so we changed to the higher premium of coverage. Does anyone know of an over the counter or alternative I could buy at Whole Foods that I could take that might help in place of an antidepressant Rx? Again - thank you all soo much for being there for me and for all of us as we wade through these troubled waters.

By annwood On 2009.10.03 12:02
I don't think there is anything over the counter that will work. I do think it is necessary that you find some way to get the money for 1 physician appt. The medication itself is not that expensive and I really think you need it. It will certainly make thing easier for you and your health has priority since you are the caregiver. Do you have a family physician - will a telephone call do it for you?

By rettele On 2009.10.03 16:55
If you get an appt with a doctor and get a RX-make sure it is generic and check with walmart,walgreens for their $4.00 script. The one I take is only 10.00 for 3 month supply. As some one mentioned they are not that expensive and definetly help.

By karolinakitty On 2009.10.03 19:49
DK ... try your County Health Department ... most counties have a mental health unit that go according to would probably see a psychologist and they could prescribe you what you need.. ours also has a discount prescription card from the county for at least 10% on most meds for mental health ... I looked into this myself just in case i needed something in the future......

By my4kids On 2009.10.03 23:38
Hi DKleinert,
First, prayers and sympathy for you and your husband. It is so very difficult, the losses are many...partner, friend, confidante...and the workload is huge. I just had one more suggestion on the medication front. Whether for yourself or your husband's medications, don't hesitate to ask your doctor if he has samples (they often have samples for the newer brand name drugs). My husband's doctors have provided us with samples continually on 2 of his meds for almost a year now. At one point we felt we should just ask for a scrip, but the doctor asked why...he said as long as he has the samples he is happy to give them to us. Also, if you have access to a mailorder pharmacy for 90 day supplies (or if you can get a 90 day supply from your local pharmacy), do so, especially at year end to carry you thru the 1st qtr of the new year. One other thing ... it sounds as if you have no time, but if there are any parkinson's support groups in your area, you would no doubt meet some wonderful people who could offer comfort and a sympathic ear. Blessings to you...I truly hope things improve some.

By lurkingforacure On 2009.10.04 00:39
I am so sorry you are having such a hard time. I can second the samples from the doc's office-we have gotten them several times (one time, we got so many that when I did the math to figure out how much we saved not having to buy them, it paid for the office visit! Now THAT'S a helpful doc!) We don't always get them but it never hurts to ask.

I don't know about Whole Foods having an over the counter antidepressant but I will offer that if you are not eating right (and I can only imagine how hard that is to do with three jobs, caregiving, running the entire household, etc.) you are not going to be able to balance even if you do get one. At a minimum, I would take an organic FOOD BASED multimineral/multivitamin, there are a few companies that make a one-a-day type that would fill in any gaps your diet might miss here or there. I rotate ours, one bottle will be New Chapter Organics One Daily, the next month I might get MegaFoods....these are pricey but they really seem to help me. Few folks know that our bodies can make many vitamins from food we eat, but our bodies cannot make minerals! We MUST get those from food or a supplement. Lack of various minerals causes all kinds of problems, as we all know.

I hope tomorrow is a better day for you.

By dkleinert On 2009.10.05 00:36
Oh, my gosh - thank you - all of you for the awesome suggestions and posts in the last couple of days. Today is my "Friday", so I am off for 2 days from one of my jobs, so I have time tonight to check in with you. My husband is in bed and the house is quiet except for the sound of the dryer! I will ask for samples - that is a GREAT idea. I will also check to see if I can get into a local clinic that might take me....another good idea. I am an organic food advocate, and that is part of our problem. I make all of my husband's meals from scratch, and juice vegetables and fruit for him once a day before I go to work. The rest of the food I put in the refrigerator and freezer. I haven't taken a multi vitamin recently, but I am with you about the Food Based multimineral/multivitamin - I am probably mineral deficient, as you said.....ummmm I think mine ran out several months ago, and I used the money to buy other food or pay a bill or something - that could be what is wrong - I may need those vitamins as you suggest - had not thought of that! It is unlike me to be such a maybe that will help. I will see what I can do to buy a small bottle this week, and I will check into whether there is a clinic I can go to for a minimum amount also. I know our famly doc charges $175 per visit without insurance, and I can't afford that. Thank you - all of you - you are so precious to me. I feel like something is missing on the evenings I get home so late and can't check-in here. Thanks for staying with me and everyone. Blessings and Hugs to all of you.

By sachet On 2009.10.05 01:29
If we have been caregivers for long we feel hopeless & helpless. My husband passed away this past month and I have felt the guilt for being short with him for his slowness or whatever. Miss him, would not want him back like he was. And I know he has been gone for about the last six months. My business in the past six years that he has been going downhill has fallen off a lot and that is what has kept us going. And I have been on antidepressents for sometime.
Big hugs and lots of prayers to you. I know about the dirty house and etc. but when my husband died some family and friends that I didn't know well came and help clean. Just now am I getting rested but still have some guilt.

By dkleinert On 2009.10.06 00:48
Oh, Sachet.....thank you for your post. I am soooo sorry for your pain and sorrow. I can't imagine.....I already feel guilty for all the years my husband was "off" and I didn't know why he was so mean and cruel - I now know it was PD, but he didn't know either, and as I experience him now, I know his actions tortured him also. I pray you have peace, knowing what you did to care for your husband was the best for him and you gave all you had. That is all anyone can ever expect of us - right? We can only give what we have, not more. I pray for days and months of rest and peace. I pray for your healing and wholeness to return. Glad your friends came and cleaned your house - what a wonderful, thoughtful thing to do for you. Blessings and Hugs, Sachet.

By LOHENGR1N On 2009.10.06 01:02
sachet, My condolences upon Your loss. My G-ds angels walk by your side in these days ahead guiding and sustaining You and Yours. May they wrap you in peace and buoy you up in rough times, lighting your way. Laugh when you can cry when you must and take time to heal. Remember We your friends are still here for you. Take care and take time. Always Al & your friends here.

By dhowes On 2009.10.06 14:43
I am completely hopeless.

I am 29 my mother diagnosed with PD in 95 is now 60. I live with her. She has good days and bad days. On the good days I think why I am I here, she can manage herself. Then we go into freeze mode, or a day of freezing, and everything changes I am the life line. I had a job once. I was often late because I was forced to wait for sinement to work, (end of the world lack of dopamine thoughts) Well I dont work any more. I am living off inheritance, its only going to last so long. My mothers Disability check pays the rent, I pay the utilities out of my dwindeling savings. End of the Rope, there is no hope. My mother is terrified of DBS and rightfully so. yes I joined 10 minutes ago and am spilling it out. I did some key word searches for "Marijuana" "Velvet Bean" "Mucuna" Ashwaghanda" nothing showed up. I am surprised as some of these alternative herbal remedies have helped my mothers symtoms, and are widely discussed on the net for use in parkinsons treatment.
not sure else to say but I am definitly feel hopeless. She wants hospice, yet she has some good days, and she is only 60. I jsut dont know. She divorced my father, My sister is a vice president of a corporation so she lives and breaths her job so there is very little time for her to help. Meanwhile am here watching my twenties come to an end. We go to a support group once a month, its nice to share. This website will help me more.

By dhowes On 2009.10.06 14:58
Anti Depressant over the counter all natural, not illegal.

I recommend Gotu Kola for anti depression. I have been on it for a year and it really lifts my spirits. Whole Foods carries the Natures Way Brand which in my oppinon is the most potent brand on the market, and ive tried 7 brands. 1 for energy, 2 to relax, 3 to get a nice buzz on. I usually take 3, unless im going to the gym than I only take one. My mother the PD patient also tried Gotu Kola but it puts her right to sleep, and she wants nothing to do with it. Sad really cause it is rumored to regrow nerve tissue.

By annwood On 2009.10.06 23:54
Welcome to our forum. Sorry that you are so low. Without additional information regarding your mother's physical state it is difficult to comment on that. It is unfortunate that you are not out there enjoying your life - 29 is far too young to be sitting at home.

I won't comment too much on the herbal meds that you recommended other than to say there are absolutely no controls on these supplements so you never really know what you are getting. Even though they are not prescription they can still contain ingredients that are harmful. With PD meds one has to always be concerned about interactions. As a nurse I know that there is no medical conspirancy against herbal meds but there just aren't any clinical studies to show that they help. I would certainly ask your mother's neurologist about them. I would also ask him/her about Hospice to see if it is time.

By dhowes On 2009.10.07 08:46
I dont like your reply. Im not impressed, with your AMA canned answers.

We have tried many of these herbal remedies and have found them to work I believe I said that in my first post.

I wasn't asking for your poisoned well opinion, we get plenty of that everywhere else. All I was stating was that we found some of these herbs to be helpful with Parkinson's, and I was surprised to see no one else had mentioned them. I encourage all readers except you to at least Google "Mucuna Prurien"

FYI My mother was a nurse as well, and has been made to repeat and memorize the same garbage you spewed.

As for your conspiracy comment you should learn how to use google because you would be surprised to learn the truth it would blow your by the book mind away.

By annwood On 2009.10.07 08:49
i'm sorry if I offended you.

By mylove On 2009.10.07 10:52
Aaaaaaaactually..... I did google that just a a curiosity, and the Wikipedia entry is worth taking a glance at. It surprised me. Interesting...

By Emma On 2009.10.07 11:23
Everyone is entitled to their own opinion, the purpose of this board is to share those opinions and ideas, ask questions and support each other. I see no reason for venomous attacks on other posters.

Just for the heck of it I did google Mucuna Prurien. It was interesting, but I noticed that psychedelic effects and increased libido are listed as possible effects. Since many Parkinson's patients, including my husband, have sexual obsessions and hallucinations I would not be inclined to try it.

I have nothing against herbal remedies and/or all natural products, however, I grew up on a farm and I can tell you that just because something is natural doesn't mean it's good for you. There are plenty of things that exist in nature that I would not put in or on my body.

By Mary On 2009.10.07 14:12
This forum is open to many things as far as venting, sharing, supporting, information, suggestions, etc., but it is NOT open to meanness. There is no place for that in this forum whatsoever. If you do not like a post, ignore it!

By lurkingforacure On 2009.10.07 14:30
My attempt to post a response earlier was interrupted by having to cart kids to preschool and school and I see now that several others have also sprung to annwood's defense, thankfully!

I know that annwood meant absolutely no offense by her response. Annwood has
been a lifesaver to many here and her insight, experience, and compassion are extremely appreciated. She continues to support us even though she lost her own spouse to PD, and that speaks volumes and means so much to us here.

If I understand some of her prior posts correctly, annwood has seen, firsthand, the damage that some of these snake oil salesman and yes, naturalists, can do. These folk prey on us, the desperate, the ill, the emotionally and physically drained, and they make a pretty penny on it. On another forum a very educated PDer went to someone who called himself an "iridologist" and he claimed he could see all kinds of problems with her bodily functions just by looking into/through her eye! She actually believed him until she got home and started thinking about it....something many do not do. And that is where one of the problems with this alternative stuff can be.

That's not to say that there are not things out there that can help, IFIFIFIF you will do the research and even let your doc in on what you are doing, so they can be sure of interactions with PD meds. Our neuro doesn't buy most of what we do, and we do a lot of alternative stuff, but at least he can assure us that it will/won't interfere with the pathetic benefit we get from the drugs or worse, give a horrendous complication from interacting with it. You can search my posts and you'll see we are pretty active in exploring what might help, we are, you might say, a white rat of sorts, self-experimenting as we do.

Mucuna has a tremendous number of followers. Another forum, neurotalk, several folks are weaning off sinemet gradually while adding more mucuna. Some have tried to do this and failed, or given up. You should go read these posts about it there on that forum if you are interested. We tried it (bought it from Banyan Botannicals here in the US), and although my husband said he definitely felt the effects, it comes on much quicker, but it also disappears extremely quickly, which could leave one in a bit of a pickle depending on where he/she was, etc. It was simply too unpredictable (which isn't really saying much, because honestly, I can't say sinemet is predictable either). But carting around that powder all day, or mixing it in a bottle (it stains terribly, BTW) and sucking on that every hour or so, was just not feasible for my husband, not with the incredibly rapid "off" that came with it for him. But that's US, everyone should educate him/herself, talk with your doc, and make your decision.

While I believe there are a great many dedicated researchers out there desperately looking for something to help and/or cure our loved ones, I also tend to fall more closely into the Big Pharma conspiracy camp where there is simply so much money in NOT curing anything that there is no incentive to do so. Sadly, it's because of this, and that there have really been no new treatments for PD since sinemet (40 years ago, now) athat shifts us to the "help yourself with natural/alternative things while you still have the means to do so" camp. We do so after careful, methodical research, always. But again, everyone has to make their own choice.

On this forum, particularly, we should all disagree agreeably. EVERYONE'S nerves are fried, we are all suffering, we all hate PD. Sometimes I even hate myself for feeling that way! It's a lose-lose-lose disease all the way around. But we do have this forum, and that is a blessing for all of us. Thanks to all for sharing and caring here.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you