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Topic Treat this as my rant if you will Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2017.07.18 16:41
We are still in here, locked inside our failing body. We are not brain dead especially if we can time an hour on the clock. If we know our needs will not be met or dealt with during a time our caregivers are busy with other business maybe having a phone handy serves us like a security blanket. You know something that makes us feel safer when you are busy. I cannot count the number of times I have explained dementia verses delusions. Delusions can be dealt with by adjusting medications and it comes and goes dementia stays and progresses. Many confuse them and interchange them which confuses the problem as they are very different. Usually younger onset don't develop dementia. Wanting to partake in trips to the store instead of being a burden maybe try seeing it as wanting for as long as can be the longing of trying to still be part of family life not to be met by being told they cannot go. They may be trying to hold onto family for as long as they can. They are still there wanting to live and enjoy what they can before they can't move or participate at all anymore. They are grown men and women and resent being treated like a child. For all the years on this forum the number of caregivers who have said even with as bad it was at it's worst I'd trade it if I could get them back. I cannot count the number of times I've read that. If you are looking to get a counselor or therapist try to find one with a background dealing with P.D. Okay rant done, I just had to get that out as a couple of posts shocked me. Let's be good to each other.

By Busymom On 2017.07.18 18:06
I'm sure my post is one of those you read.

I'm sure these things are how you feel, how you see your life...and clearly you are still able to speak eloquently, type a paragraph, think clearly...but some are not so lucky, some are more advanced and things are different for them and the people who are their caregivers.

In my case, the doctors are almost certain he has early onset LBD, not just parkinson's (they will only make it "almost" because 100% proof requires an autopsy) so it is dementia, not delusions. He cannot see well, he can't remember where he is or why he's there, or who he's with, and if you step more than one foot away, he will wander off and get lost...in the mall that's not good. I know he wants to participate with family while he still can, but the problem is that "still can" is edging in to "can't", we are about there. Obviously he is not able to do anything to help around the house, so it is all on me, the house, the kids, our whole world, and in the time it would take me to manage to get him to the car, get him in to the car and buckled, get him out, get him in a store, guide him to the back to get milk, and go through the whole process again with the car to get back home, I could have made that trip twice on my own, and I just don't have that kind of time, it's not feasible with all I have to do.

Picture this...daughter's friend's birthday coming up, she wants a certain present from the store in the mall, we have to go shopping for a gift.
"I'm coming too! First I have to go to the...the...." (can't find the word for Restroom).
The kids and I sit in the car for 15 minutes waiting for him to get out of the bathroom. With great difficulty he walks to the car, won't use a walker or a wheelchair. Another 5 minutes spent getting him in the car. At the mall, we struggle to get him out of the car. He almost steps in front of an oncoming car. Inside the mall, it's too cold for him, and people bump into him passing by, which almost knocks him over, and the kids want to enjoy their time by stopping in this store or that, but we can't. We struggle on the escalator because he can't turn around in an elevator. Then he gets lost in the crowd upstairs and we all have to branch out and find him. Now he is tired and cold and and disoriented from getting separated, and has to use the restroom again, but he can't go by himself and we can't use the men's room. He says "I can't do this anymore, I can't walk, you have to take me home, I wanna go home!"
"But mom, we haven't gotten her gift yet!"
So we have to get him all the way back to the car, into the car, and home, where we settle him in the house and go all the way back to the mall by ourselves to get the gift.

Hence..."Honey, you should just stay home, you know it will be too much for you."
But he doesn't really know, because he can't remember what it was like last time, due to the dementia.
This is only a tiny excerpt of our everyday lives. It gets much much worse than this, things much worse happen, like when he wandered out of the house in the rain and ended up two miles away not knowing where he was or how he got there, and I had to go driving around town looking for him, it's lucky I found him. Or when he screamed and threw fits on a train in the middle of the night and almost got us thrown off in the middle of nowhere, or the times he's fallen, like the time he slammed down 1/2 inch from a table corner at his temple.

So...everyone's experiences are different, we can't interject ourselves into that position and think "I'd never respond that way," because you aren't in their shoes, and their shoes probably changed multiple times over the long distance...very long, some of us...have walked in them. Even a caregiver who starts out loving and fired up to help, can say exhaustedly after years of "carrying" their PWP, "I just can't do this anymore..., the struggle is too much..." Nobody starts out that way, but unless you have been a long time caregiver, you have no idea what it's like.

As for us, it's up to me as Mom and head of the house to set boundaries and do what's best for the kids, and I'm sorry if he wants to do certain things and be part of family outings but it's just not always feasible and not even in his own best interest, so I have to make those judgement calls. It's the sad state LBD/Parkinson's has led us to.
Sorry this was long... :(

By fishing15 On 2017.07.18 20:11
Well said by busymom, I feel the same way. I am the only caregiver for my husband and take care of the house and everything.

By lurkingforacure On 2017.07.18 21:34
Thank you, Busymom, for taking the time to explain what all a simple trip to get a gift can involve. I really wish you could get some help.

Our area has a day care program I am considering, and we do have to pay for it out of pocket, but it's all day (if they have room) for less than ten bucks an hour, and we need help. When I told my husband that I had scheduled an appt. for us to go visit the program, he told me he wasn't interested. A year ago I would have cancelled the appt, but not now. We are going to the appt., and if they have room, we will go at least once a week. It's my hope that he will like the program, and look forward to going. If he doesn't, then I will look at hiring help in our home, which won't be as much fun for him (but honestly, probably easier for me since I won't have to get him ready and drive him anywhere).

I know how much my husband has lost to PD, and it's the worst. But it doesn't change where we are in this disease.

By LOHENGR1N On 2017.07.19 00:26
Well I can see if I want to "rant" I cannot? Please I know the struggles we face from day to day. Yes LBD is confirmed at autopsy but then so is Parkinson's Disease. Depending upon the section lewy bodies are found because yes they are present in P.D. also. Please you do not know the struggles I face daily with my disease but because I take time to visit the forum and try to help others make sense of this disease I'm doing fine? And I'm lucky? Yes I'm lucky enough to have seen many, many friends die from P.D. I've been fighting over what 31 years with this disease. I struggle to stay independent daily. Yes it's a drag to have to help someone to the store and yes you live with the results of the devastation this disease causes but you don't have to take our medicine every morning and wait because if you don't wait you bounce off walls or split your head open on the door casing. But you know what since this forum started along with trying to help caregivers to understand whys of things I have also spoke up for patients who cannot any more and I will continue to speak for patients. We as was mentioned in other posts are dying but we should be able to die with dignity. Which most caregivers seem to understand. I said this before and got much gnashing of teeth response but you caregivers will have life after P.D. we patients do not. So please don't lecture about What it takes to go out to the store, You have no idea what it takes to get to that point for Us are our meds working, energy used just to get to the car, to get from car to store. To have people stare you do not know how we feel when our medicine cuts out right in the middle of what we are doing. Or how it feels to be told no you cannot go with us as if our family were ashamed of us. So as I said I don't get to rant. I'm told by someone who lives with addressing the effects of My disease how it is? Like I said over 31 years of living in Parkinson's hell. Everyone is happy if I can solve a problem or help some way but if I speak up for fellow patients ...well G-d forbid? No guilt felt here either. So take your shots as you will.

By bksquared On 2017.07.19 00:34
Busymom - boy do I get it. Each element of daily life becomes a complex burden. At least you can leave your husband home alone. Mine needs constant monitoring. For example, I went to get the mail in our box at the end of the driveway. Returned to the house, he had gotten up from the kitchen table to reheat his bacon in the toaster oven. The smoke and flames were a reality check to assess his required level of care. You are on target about trying to take him any where. For family events (birthdays, plays, sports) I need to take a caregiver with us. Otherwise it is a huge wasted effort and I become resentful. When my children were young I paid for nursery and after-school care so I could work. I hired a babysitter to go to a movie or out to dinner. Well-- life has not changed except the care or sitter is for my husband. No one can walk this PD walk in anyone else's shoes. But to know there is a forum to find the support and understanding of others without judgement is critical to our ability to cope.

By Daisy123 On 2017.07.19 03:15
Please.. lets not argue like this on the forum. If there is one thing I've learned from all of this is that none of us are qualified to judge the extent of another's suffering, whether that be of the PWP or the caregiver.

Each of us have a path to follow which none would have wished for. This awful disease beats us all up every day and harsh things are said too often in pain, frustration and anger, but I know that we all need to be there to offer support no matter what is said.

I know the heartache of having a young PD husband with dementia. I have exactly the same situation and I feel like you do every day. The responsibilities of trying to juggle everything are overwhelming, but Lohengrin has tremendous insight as a PWP for so long and his opinions always make me stop and try and rethink from DH's point of view. Sometimes it changes my perspective and I'm glad for it.

Therefore I value his input as I do everyone who contributes on this forum. Let's be there for each other.

By exhausted wife On 2017.07.19 06:45
[deleted]

By Lynnie2 On 2017.07.19 10:32
You have probably heard this before but get as much help as you can.
I have a PSW come for 6 hours once a week. I have to pay $14 per hour but it's worth it. Also he goes to a Day Away Program at the Alzheimer's Society and that's only $16 per day which includes a hot meal so that really worth it. It gives me 5 1/2 hours to do something for myself.
Also I have a PSW shower him twice and week and that doesn't cost me anything.

I don't leave my husband very long but sometimes go and get the mail at the Post Office or uptown to the pharmacy. If he is sleeping then I can leave him longer, but as a whole I don't leave him much.
I live in Ontario Canada, so maybe you don't have the programs to help your person with PD. If you do live there then I would look into anything that could help you.
I know it cost a lot for the PSW at $14. per hour but your health is more important and if you can afford it then look into it.
My PSW is a blessing and my husband and her get along so well together.
You need the time for yourself and do shopping or go swimming at the pool or visit friends.
I miss the social part of making a conversation with my husband so by going out with friends it help me that way.

By flowers12 On 2017.07.19 14:44
LOHENGR1N I'm thankful we have you on this forum to open our eyes to what it feels like to have PD and struggle with daily life. You are so knowledgeable and share things with us that we may never know.

Being our loved ones caregiver is so full of sadness and heartache seeing them struggle to do the most mundane tasks. I feel like there is nothing I can do sometimes other than be there. I think that's what causes the frustration and stress, not being able to really do anything to make things better. Knowing that things are going to only get worse. For those who have children in the home it's even more difficult having to care for them also. We all feel desperate at times and come here to vent which helps just to get it off our minds for a minute and often find comfort in the responses we get. Bless us all and prayers for loving patience.

By jcoff012 On 2017.07.19 15:14
Al, and others, it seems that every few months, this group goes through frustrations and fears...and it all comes out on this board. We all have a battle to fight, at different stages. Maybe that's a good thing for many...we are able to "see" how others feel and can offer help, solicited or unsolicited.

I do, however, become saddened by the posts that show that frustration that is thrown at the PWP. I always say the same thing: If the tables were reversed, wouldn't we want a compassionate person helping us? Again, we are frustrated and saddened by the disease, NOT the person we love.

Carl and I have just celebrated our fiftieth anniversary and next week I will be 69...*I* am not as I was 51 years ago when we met. I am slower. I have grey hair under all this hair color. I have two chronic diseases that require meds, monitoring, and sap my strength. But, Carl accepts my limitations. So, I offer him the same love and consideration.

If it takes him longer to get ready to go anywhere, I simply find something to do while I wait. If he falls asleep at 8 PM, I go on the computer or watch tv. If he is impatient, I let him rant...sometimes, I fight back! lol I am not perfect! ;)

What I am trying to say is let it go...enjoy your life as best you can. Al is right. We caregivers will go on afterwards, the PWP has a finite time left. I always tell Carl, I want to be here for him as long as I can have him in my life, but the Lord knows I would rather go first, because my life IS him, and I can not imagine it without him in it.

Please know this is not written to chastise anyone, but to offer another point of view from a caregiver who understands, but who wants to let you see life is beautiful, no matter what.

Hugs to all. Thank you for all of your insights and thoughts. Please accept my opinion as just that, *my* opinion...given from the heart. Jane

By lurkingforacure On 2017.07.20 12:07
Al, I hope you know how much we value your opinions, insight, and wisdom.. I don't think anyone meant any offense, truly. Rather, I think we come from varied positions and perspectives in dealing with this, and that seems to cause some of the friction, if you want to call it that.

I didn't read anyone's post as indicating that they were throwing their frustrations at their PWP: to the contrary, we hold it all in, trying to cope as best as we can, and then vent it out here on the forum so that we can keep coping on a daily/hourly basis as best as we can. We try to shield and protect our PWP from our tears, frustrations, and worries, so that they don't feel any worse than they already do, but that doesn't mean we shouldn't be able to post those frustrations and worries on the forum. And personally, I know that if the tables were reversed and I had the PD, my PWP would not be taking care of me as I am caring for him. I would have been placed in a facility long ago.

I'll go out on a limb here and offer, as a way of helping us all see another perspective, that I understand how horrible it must be to work your whole life, looking forward to those fun-filled and carefree golden years, only to have those brutally yanked away and, on top of that, have those long-awaited years replaced with years of PD. It would also be very difficult to accept that the retirement money you so carefully saved will now have to be spent on PD instead of the retirement plans that you and your loved one had made.

On the other end of the spectrum are those of us who have kids at home and/or still work. We just flat don't have the kind of time that others not in the same life place do. We cannot simply wait for our PWP to get dressed and ready to go, like we would be able to do if we were retired/not working/no kids at home. If we have to go get a birthday present at the mall, we only have X amount of time to check that off the list, because Sally has to be at soccer practice at 2, and Billy has a game at 4, maybe a kid has tutoring, swim lesson/practice, etc., and then there's dinner that has to be made, homework, baths and bedtimes, and on and on. We just don't have the luxury of time to take 2-3 hours (or more) to go to the mall, or grocery store, or fill in the blank. And on top of all of this we have to be sure our PWP has their prescriptions filled, takes their meds on time, and has their needs attended to as well.

All of us have stresses, pressures, worries, and frustrations. We need to be able to come here without feeling judged or made to feel like we're negative Nellie, and support each other.

By LOHENGR1N On 2017.07.20 16:49
Well I was going to let this lay but since I am addressed what brought my "venting/ranting" on was a post that the PWP is a body waiting to get cold. No man, no relationship, no marriage. Harsh words. And one should expect to be the subject of not judgement but criticism. You know me many times I try to give a different view of things if one waits 15 minutes in a car with the children for their PWP to walk to the car why not get out take an elbow to steady a arm and they get to the car quicker? I don't know but that's the way I think. (maybe it is my Parkinsonian brain) but I look at things and try to figure how to make it easier on myself and my aide. I realize many PWP cannot puzzle out ways to make it easier. And caregivers don't see the time to puzzle out the kids, medicine and weariness of the PWP plus what they want to get done into a short trip or a few minutes of spare time. (I know what is this thing called spare time). You know I try to let vents and rants go because we all need to take pressure off at times. However there are some things I cannot let go without responding. And when I do the We all need a place to vent without judgment is shouted from the mountain tops showing that some think they deserve carte blanc while others should be quiet. I'm sorry if I started this up again It was not my intent to. As I said before be good to each other, peace and if not at least a truce

By lurkingforacure On 2017.07.20 17:22
You're right Al, we do need to be good to each other, because honestly, no one else knows what it's like, not even the doctors. And as one posted commented, no one else knows what's it's like in your home/situation but you. Very true.

By jcoff012 On 2017.07.20 17:36
Since *I* am one of the "others" who is retired and has the time", I will comment one more time. I believe that the problem on the boards is often a case of being judgmental...Each situation is different, each person deals with his stress, his life, his love, his commitment differently. Just because I am retired does not mean I am less busy, less committed to my community, my family, etc. than anyone else. It is quite simply that I choose to accept my and my husband's limitations...and his fine qualities. He did not ask for PD and neither did I ask for cancer or a stroke, but they are all part of our lives.

We married as youngsters and have faced many hard times, but we also have kept things in perspective. I, for one, came to this forum seeking answers, seeking hope. Venting has its place, but so does expressing that some of us choose NOT to...but, rather, we choose to encourage others to try to cope with life. Life without trials was never promised to any of us. No one wants to have to deal with PD, but, sadly, it IS part of our lives. How we deal with it speaks volumes.

Everyone wishes there was a cure for PD...as much for our families, as for our PWP. But, we also want a cure for any chronic disease. It is human nature to not want our loved ones to suffer, nor want ourselves to become bitter or frustrated when we can do nothing.

So, I encourage everyone to take a deep breath, step back and find hope and goodness, not just the sadness. Try to laugh every day...sounds inane and obtuse at times, but before my first cancer surgery, my team said that laughter helps relieve stress and clear your mind...if even for just a moment.

Remember, none of us ever planned to be a caregiver, but that is what we are...just keep the "care" in that word...you CAN do it.

By pinki53 On 2017.07.24 19:11
I can't read all of your posts here. The pain is still too raw.
My dear husband lost his battle on July 3rd.
I've composed a lot of thoughts here but I keep deleting them.

My prayers for you all.

By LOHENGR1N On 2017.07.24 19:36
Pink, I'm so sorry for your loss, my sincerest condolences to You, your family and friends. Sincerely Al.

By flowers12 On 2017.07.24 19:42
Pink, my thoughts and prayers are with you and your family. I'm so sorry for your loss.

By jcoff012 On 2017.07.24 22:07
Pinki, I have been logging on daily to see how you are. Now I know. Please know I am so very sorry for your loss and hope you have others close by to help you through this difficult time. Always, Jane

By Daisy123 On 2017.07.25 06:32
Dear Pinki,

I am so sorry for your loss. I hope that you will find inner peace and regain your strength of spirit. Take all the time you need and remember your many friends here are thinking and praying for you and your family.

Hugs x

By lurkingforacure On 2017.07.25 12:08
Pinki,

I too was so saddened to read this, and wish you peace. Remember the wonderful man your husband was, and the happy memories you made and shared together. Hugs and prayers, lfac

By Daybyday On 2017.08.07 19:34
Dearest Pinki.....so very sorry to hear about your dear husband losing his battle. It is very hard for you right now but know that we are all praying for you during this tough time.

I have been lurking for years on here reading everything and contributing where I can. Just want to thank Al for all of his insights and let him know we really do appreciate hearing his unique perspective. Thank u thank u thank u!!

By pinki53 On 2017.08.09 22:36
I didn't mean to threadjack this post. I apologize. I'm now seeing things differently. Seeing in ways that I had been blinded to.
I posted here because I kept thinking about all the troubles and stress and situations we had been going through; and how tired I was and how frustrated I had been getting.
And then....it was all over.
Every day I regret getting upset and angry with him.
Every day I regret not doing more for him (altho at the time I thought I was doing everything he wanted).
Every day I regret that we did not visit his kids more or his brother & his family more - even tho travel was hard for him.
Every day I want him back.
I don't want to be able to "sleep in".
I don't want to be able to go to the store without rushing.
I don't want to be able to start a project and finish it without interruptions.
I don't want to be able to eat a meal without stopping chewing while I try to hear him.
Please know that I am not berating any of you for your "venting". I complained a lot. I had to vent to relieve the stress. I know you do too.
But I want him back. He was the love of my life and I miss him every minute of every day.
Going from being a 24/7 caregiver to an empty house is hard.

My prayers continue for each of you. PD is one of if not the most devastating thing I can imagine happening to anyone.

By flowers12 On 2017.08.10 13:23
Pinki, warm strong hugs to you. You have lost the man you loved. You did everything possible to help him throughout the course of this devastating illness. We are only capable of doing our best and we regret the times we are just too stressed, frustrated and tired to be able to do better. I lay in bed every night listening to my honey's breathing and fear the day he won't be there.
There are no words to ease your heartache now, but know we are all praying for you to find comfort in your memories of the good times together.

By Elaine7 On 2017.08.10 22:03
Pinki you have my deepest sympathy. I agree with all that you posted. I just lost my DH on July 30th and I can't explain the empty feeling. I miss him so very much and I want him back. I too complained incessantly and I feel very guilty about all of that. He was only dx in 2010. He spent the last 3 mos. in the hospital, rehab. center, or nursing home. They were quite sure it was Parkinson"s and LBD. They had a hard time handling his behaviors in the hospital and in the nursing home. I will never know whether it was the disease or the side effects of the medications that caused his fast decline. Thank you for sharing.

By jcoff012 On 2017.08.10 22:36
Pinki, please don't be so hard on yourself. In life, there are too many "I should have-s"...we all do the best we can at the time. It is human nature to wish things were as before. But, life doesn't give us that option. If only it could.

I hope time will heal...you will never forget him or your love, but time will lessen that hurt and in time, you will find peace. It doesn't mean you will forget because you won't...it just won't hurt so much.

Take care of yourself


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