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Topic Trip Back East. Envy rears its head. Go to previous topic Go to next topic Go to higher level

By Witsend On 2013.10.29 12:04
We just finished a trip. too, back east to see my family whom I haven't seen since our father's funeral seven years ago. We went first class also, and I agree with Jane that it was worth the extra expense just due to convenience. Also, having a wheelchair attendant from the airlines was worth its weight in gold. My husband would never have made it through those airports and the security lines (we had TSA precheck, which also made the security easier). Other than him staying up all night in the hotel rooms buying porn - which he has never done before - "hypersexuality" has become the bane of my existence (it sure doesn't bother him) for a year now, and will only continue to intensify. Doctor took him off Mirapex, but no improvement. Anyway, he can barely work the remote, so he kept hitting the wrong buttons, and we spent a fortune covering his movie fees, on top of all the money spent on the trip. Overall, it went well (which just means it wasn't a total disaster).

I am almost sorry we made the trip for one reason, though. It was hard to see my sisters and brothers and their families leading normal lives and aging in a predictable way. I know now that I am truly alone. Aside from being 3,000 miles away from anyone, no one there can have a clue what my "life" is like. It's been hard not to feel like my life is over, and there's nothing to look forward to except some fresh new hell being visited on us seemingly every day. When I stay in my caregiver cocoon without poking my head out, I never think about what a "normal" life would be like. I take care not to think about it.

I know people would say, "Look, everyone has problems," but I promise you, they don't have problems like we PWP's and caregivers have. Not that it's a competition, it's just's not good. It never will be good. It's over. And this is the only place I can say that, so I thank you all and thank God for this forum!


By VioletV On 2013.10.29 18:30
Oh, I know what you mean--seeing others who are experiencing normal aging. We had family visitors this fall -- our age -- who have made amazing trips to every continent (I mean every, including Antarctica). For us, a 15 minute walk up to the local deli and back, or a 5 minute walk around the house, counts as an excursion. And, only two years ago, we were traveling fairly easily. Sigh . . .

It is really a challenge to just be "ok" with how life with PD unfolds. Right now I'm struggling to manage the fact that it is too distressing for my PWP to watch TV or movies here at home. Of course we can't go out to plays, movies, meals...

And on the other hand, I just visited my sister (3 hours at the end of my one day business trip) and saw her situation. We all cope where and how we have to.

But yes, this forum has been a godsend.

By parkinit On 2013.10.29 20:42
I totally understand, Violet. I told someone last week that I feel that we are both slowly dying. My life is slowing ebbing away as well. I used to be a person who had such joy and embraced life. I need a change of attitude, I know, but I feel like this life inside me, this joy has slowly been squeezed away by PD. My PWP is "advanced stage."

Every day I find something new about this disease. I mentioned to my hairdresser, whose mother has PD, that my PWP doesn't seem to be involved in grandkids, etc., and that if he talks about anything, it is usually about himself. She said her mother was the same way - no interest in grandkids and very self-involved. I guess this is another facet of the disease in the advanced stages.

By lurkingforacure On 2013.10.29 21:56
I have that too, and it's hard because we have young kids and I don't have a choice but to be around and see other moms and dads being active moms and dads. They look so happy and carefree, I can't even imagine what that is like.

Our youngest has begun complaining to me recently that when I am gone,
his dad never feeds him, but just feeds himself, and he's hungry. It makes me angry, because I feel like if my husband can make the effort to fix himself something to eat, why can't he make his own children something to eat, too?

The other day I heard my husband tell our youngest: "When you cure me, I'll be able to play with you all day long!" I nearly died, what a burden to put on a small child. I went in there and told him to never say that again, and then I had to talk to our child who is sitting there thinking he bears the responsibility for curing his father of PD. It was horrible and I am still really angry thinking about it.

By jcoff012 On 2013.10.30 12:07
We just finished a two week stay in Maui. It had ups and downs, but mostly was relaxing.

We haven't been to Hawaii in four years, which for us, is unusual...we live on the West Coast, so we went yearly, sometimes twice a year. So, for us not to go in so long, has been was, and is, our vacation place of choice, since we live in California and have always been outdoors people.

As I said in other posts, we went first class and it was worth the huge price...the care, attention, and even being in the separate lounge pre-flight made the entire trip far more pleasant..he commented how comfortable the chairs were while sitting and waiting to board. After the flight attendants were told of the PD (one has a father with it), he was treated even MORE royally and I noticed the flight attendant carefully monitored his movements around the made for a relaxed trip for me, I selfishly have to admit. I even fell asleep because I was relaxed.

I know so many wives here are having great difficulties and for that, I am so very sorry. I guess my husband and I have some trials, too. In fact, last night was NOT a good night. Who would have thought that a man who is normally extremely kind and even tempered could go into a rant and throw things, storm out of the room and pout for hours, all because, when getting our grandson (4) ready to go home (we babysit him three days a week), he had on the wrong tennis shoes, so I started to take the others off...and he lost it...saying "THOSE aren't the 'right' shoes" and stormed into the other room...If it weren't sad, I would have hit him!..He was furious with me for changing out the shoes---I was asked by our daughter to make sure he was wearing his new tennis shoes home so that they would have them for their trip today...I didn't bother to explain, but held my ground and didn't argue...he got the message, but pouted most of the night (Sorry, Al, but it WAS pouting). It is now 8:45 in the morning and he still is, but true.

HOWEVER, I choose to be the "bigger person" here...I watched his mom deal with PD for 22 years. She, like him, dealt with it with uncommon grace on most days. I will allow him some fits of anger, etc...I think I saw a look of "why are you changing something I did, do you think I don't know how to put shoes on my grandson?" in his face. He is a very proud man and is noticing the subtle changes in himself...and is NOT taking them well.

When we started his personal PD journey four years ago, he was humble and accepting of the inevitable. Deep down, he still is. I just think that now he is fighting as hard as he can, doesn't accept a lot of the changes, and so his life is one of constant turmoil...this must be extremely difficult for a man who thrives on being in control.

I guess what I am saying is that as caregivers we have to accept that this man we married would not normally act or say things out of context if it were not for the PD. They are changing, which means we, too, are changing. Some things are for the better (I am learning patience, which I have never had)...some for the worst (I am learning to find happiness in ways which do not always include my husband--even shopping alone, which I rarely did before.)

But, then life has a way of bringing us back to our past life, pre-PD...One morning in Hawaii, he and I went to a buffet breakfast by the pool. I was attempting to stay on Weight Watchers, so passed on the "sweets" row...Well, here he came with a HUGE chocolate donut and place it before me..."Jane, we just may not ever get back, so I want to see you enjoy yourself this morning, no guilt!" A small thing, but touchingly familiar...a man who seems more withdrawn now who smiled and handed me a sweet was touching...and it was the man I will love til we have to leave this earth.

I just try to remember our lives four+ years ago...that man would never have pouted all night...that man is downstairs right now making his own cereal..but, I smell my Eggbeaters cooking, too...Life is funny...just when we have it figured out, something changes...

Hugs to all on this long trip with PD. Know you are loved and appreciated, even if you never hear it ARE and you are special. After all, you are still here...still trying to understand...still fighting...Hugs, Jane

By LOHENGR1N On 2013.10.30 13:34
Ah Jane, Don't apologize to Me. Okay so He "pouted" well looking at it from outside the moment, you're right He's scared, He's trying to hold on, keep what He's got, doesn't know when or what is coming up next. Was He trying to help you get your Grandson ready, of course. And yeah probably the those aren't the right shoes to him was a you can't even get him dressed right. But I think in this case "holding your ground" as you did didn't help either of you. Looking back might a brief Oh I forgot to tell you his Mom wanted the other shoes on because they needed them for tomorrow. There would have been no argument ....just doing as mommy asked. No She thinks I can't dress our Grandson anymore, no those are the wrong shoes? He's seeing different Doctors and worried about the medication and how it will effect Him. Just got done a massive amount of traveling in a relatively short time. Tis a tightrope we walk with this disease and many times confusing interaction take place, We do the best We can. Just giving a glimpse of the view from a different angle. Take care, best of luck and hang in there

By carman96 On 2013.10.30 14:38
I understand how hard it is seeing others have "normal" lives. We have virtually no social life. Everything revolves around doctor and physical therapy appointments. It's just very difficult to do things and go places anymore. I feel like life is passing me by.
Yes, everyone has problems. My sister lost her husband to cancer this year. But he was only sick for less than a year, and now she is getting on with her life. My husband's sister has gone through a horrible time with chemo and surgery, but she is recovering. With cancer, it seems like everyone rallies around to help. But we seem to have been forgotten. We have no hope of things getting better, and that's the pits!
Jane, I am glad you had a chance to travel and that everything worked out. Do as much as you can while you can. I'm glad we had the chance to travel after diagnoses and before it became so difficult.

By jcoff012 On 2013.10.30 17:00
Al, I agree...standing my ground made it worse, but as other caregivers will agree, IS a matter of personal that moment, *I* needed to not give in to his temper...

As an aside...after my rambling this morning, I went downstairs to eat my Eggbeaters and he said, "I need to order the big nautilus for Beth (his sister). Do you still think it's a good idea?" I said, "Well, you know we don't always agree on things, but talking things through is better than displays of temper, right? If I didn't think you should order it, I would tell you to talk about it..." He gave me a hug and said, "Well, of course, but sometimes we act 'in the moment' and regret it later, but the damage is done." I said, "OK, but life's too short for regrets..."

And, the crisis is over...I am up here getting ready to iron and he's napping on the couch. Back to normal.

As for traveling, Carman, I think it is his way of tying up loose ends. He knows the reality of this disease, so I see him trying to cram into his life as many visits and things on his "bucket list" as possible. It is a great deal of traveling and *I* am tired, so he must be, too..but, as I have said before, I owe him the same dedication and love as he has shown me through my cancer trials...He helped me, carried me to the bathroom, washed my hair, brought me lunch daily after each surgery...and gave up our social life, which for a university VP was extensive, to be by my side during and after my hospital stays and surgeries...I will do the same for him.

Have to admit, I was angry last night, why I waited to write til I slept on it. Fear of losing him to this PD battle changes our daily pattern of living. I just need to learn to live with the changes and remain the best person I can be...for him, but for ME, too...No matter what this stupid disease throws in our way, we are still important in our own right...individually, but as the spouse of someone who would be the first one to say, "DON'T give in to it; fight it...give it Hell..." LOL So be it. Hugs, Jane

By LOHENGR1N On 2013.10.30 23:46
All I was saying was When your husband questioned those are the wrong shoes? A simple yes Our Daughter requested he wear the other shoes home today. I didn't see that as an issue of holding one's ground or not or giving in to his temper.

By jcoff012 On 2013.10.31 10:48
Al, I know what you were know I need to clarify...I was just saying that sometimes we caregivers are expected to know what is going on in your mind's PRIOR to an incident! *Not really, but it seems like it!*

As in any misunderstanding, hindsight is the key...Yes, I SHOULD have said something, but I guess, being human, too, I don't always want HIM to question me! lol Oh, well, as I said, it was over quickly and everything is fine...In fact, lucky me, he ASKED me to go this morning, so I "get" to sit in the waiting room at the orthodontist while he gets his braces

Take care, enough said...I told you a long time ago, I have NO patience...something that PD is slowly making me work on...hugs, Jane

By umajane On 2013.10.31 11:46
It is so sad not to lead the normal social life. I too am envious of how my friends are aging. They have no idea of what really goes on at our home and how we struggle. I have to be thankful for all that we have done but honestly we always want more of "the good life". I am finding eating is restaurants is getting difficult unless everything is cut up real small and sometimes it gets messy. but should we stop that too??? In any event after a really hard night my husband is sleeping soundly but I have to cancel his PT as I think it is better to let him sleep than push him to go quickly. Decisions decisions every minute every day.

By ysracer On 2013.10.31 17:42
I agree with you umajane,

Eating out, going to parties, having friends over, going ANYWHERE and being on time.
These are all things that we do not do as a "normal good life".

Yes eating is messy and slow. Plus my PWP will order the whole menu and not eat much of anything. At least half is on the floor and table top.

Parties? we say we will go and then cancel at the last minute. We don't get invited anymore.

Having friends over? that's stressful, will she be up to seeing them when they show up? more than once we have planned to go out with friends that have come over. I end up going without my wife. She was to tired, or off her meds, or just not up to going out. It's uncomfortable going out and trying to enjoy yourself knowing she is sitting at home missing out.

And making a meal for friends? That falls completely on me, so it's not much fun trying to cook, entertain and see to her MANY needs all at the same time. So I'd rather not do that anymore.

On Time? forget it. I have given up on that. I have even tried to say the start time is 1 or 2 hours before the real time. We are still late.

Appointments? Doctor visits? typically after I plan to take time off work to be there, she cancels them at the last minute.

I know what you mean about being envious of others "normal social life".

My life is work, then go home and receive orders until bed time.
Hand me my pills, get me water, turn up the heat, turn on the AC, don't answer the phone, answer the phone, I don't want to talk, change the channel, turn up the volume, turn down the volume, carry my stuff upstairs, carry my stuff downstairs. When she finally goes to bed then it's time to clean up the mess.
Why would anyone be envious of my life?

By jcoff012 On 2013.10.31 18:17
Venting is good, but it really bothers me that the lingering message in this forum is that PWP are "doing" something to caregivers...and that the caregivers are the ones that suffer the most.

Sorry, for I am the family caregiver, the one everyone calls upon to help with ailing family members, including my own PWP. I DO understand the frustrations, the hurt, etc...BUT, I cannot accept that this life is something that is harder on the caregiver than on the PWP.

My husband is, and was, a proud man. He is a Marine (no such thing as an EX-Marine, as I am told!), very anal about his clothing and appearance, a very kind, generous man and father...and that is all changing...The man in my life can now be demanding and belligerent, can lash out (see above!), BUT...he is the man I married and love and he is the man who stood by me...the least I can do is return that devotion.

I LOVE him. I want to be with him forever. I cannot imagine my life without him in it. I will take him as he is, and cope as best I can. I am NOT naive or stupid...We have years of personal PD experience watching his Mom and family go through this..I do not need anyone to tell me I am living in an unrealistic world...PD has now been part of our lives over 28 years...and, of course, I am tired of it...BUT, HE is, too. HE wants to be "normal", to not feel different, to be able to do all the things he used to do in the past...

One example...he wanted to zipline in Hawaii...out of the question, he was told...his back problems, coupled with his meds, took that joy from him. It was the one last thing in Hawaii he had put off doing and it was on his bucket list. He was crushed. He got over it, but *I* didn't...I want for him to be as normal as he can, as long as he can...would I have been scared for him, of course, but it is his LIFE...Life is the keyword...No matter how the day to day goes, he is alive and with me...that is what I want and need. I really want to take the PD from that life...I wish I could help all of you who suffer the ravages of PD.

I think Al said it best, if I may paraphrase, the PWP will no longer be here, the caregiver will...and the caregiver has the chance for a life after the disease, the PWP knows that this is it for them...*I*, for one, know that I could not have the grace, the fortitude to face PD everyday...but, I honor and am proud of, all of you who do.

Please understand, that this is a place to vent and not be judged by others, I get that. But, understand, that many of us caregivers do not feel the same as a lot of the more vocal posters. Some of us accept the life we are given and move on. Some cannot. Some are vocal about the life they have inherited because of PD. Some are not vocal about their lives. But, we are all in this together and NONE of us wants to be here. We just are.

By umajane On 2013.10.31 20:52
Jane….that is a good point…we are all suffering in some way of course…. As anything in life Parkinson's came on suddenly as a diagnosis for me as a caregiver as well as my husband of course. We are just learning to adjust, to be patient, to struggle. This is new for us and it will take time. Venting and hearing others is very helpful. By the way I also live in Northern Ca. go to WW and am planning a trip to Kauii in January. I have enjoyed your traveling posts…..very informative.

By jcoff012 On 2013.10.31 21:18
Umajane, we live in Cloverdale, CA, which is thirty minutes north of Santa Rosa, off 101! Hugs and learn from everyone you two PWP follow the same journey...and none of us desire to be here. Good luck and keep posting. As I said, venting is needed and no one understands the journey until they live it...I just prefer to ask a lot of questions and keep is a terrible disease, that's for sure.

By carman96 On 2013.10.31 21:31
I can relate to what everyone is saying. It is difficult to be a caregiver, and it's good we have a forum. I don't think it's harder for me than my PWP. We are all at different stages in the disease, and my husband's dementia is progressing rapidly. So for me I just feel so darn lonely sometimes, it really helps me to know I'm not the only caregiver going through this.
Thanks to everyone for their perspectives. It is good to hear what everyone has to say.

By HKMP5N On 2013.11.01 08:38
jcoff012, I definitely disagree with you. I feel this is every bit as hard on the caregiver as the patient. Do we deal with the PD actual disease and it's awful impacts? No. However, we DO suffer just as severe impact on our lives due to the critical and high demands advanced PD patients need.

I may not have the disease taking my life from me but I most certainly have the his disease completely robbing my life from me caring for him. This is not just personal and travel related, this is most certainly professional. I am in a job I dislike but since I have been here for years I get tremendous freedom for time off as I have to burn most of my personal leave for him and DR appointments. I could never start a new job with the amount of time I take off for all his needs.

43 year old son only caregiver to his Father.

By carman96 On 2013.11.01 11:31
HKMPSN, I have a son your age and I would really hate for him to sacrifice all his time taking care of me. You are a good son!
I feel bad for everyone, and it must be especially difficult to work and be a caregiver.
But can we not get into whether anyone has it "worse" than anyone else? We are all doing the best we can under extremely stressful circumstances. No one really knows what anyone else is going through.
I don't even think of what we are saying here as "venting". It is just we are trying to figure out how to deal with this horrible disease. It's not that we don't love our PWP, and we all want to do whats best, which sometimes seems overwhelming. This is the only place I feel I can say what I am thinking. So don't "judge" me or anyone else or make us feel guilty for having these feelings.
PLEASE let this be a safe place for us to come when we feel we just can't go on, so we can get some encouragement from others, not criticism.

By jcoff012 On 2013.11.01 12:11
This is a GREAT discussion...I blame should be attached to it...However, I remain steadfast in what I said...PD is a horrible disease that changes the PWP AND the rest of the family, but I really have empathy for the PWP. To me, no matter what the sacrifice we make, none is greater than the trials a PWP faces daily.

But, with any chronic illness or disease sacrifice and daily trials for the caregiver seem to be the norm...Heavens, my BIL and SIL have four children and one is a severely handicapped 12 year old with CP who will NEVER live on his own; they will be caregivers forever. I am sure that they face daily issues that are very similar to those with PD. Yet, they go on and do their best, but I have never heard either of them say anything but loving comments about him. He is wheelchair bound, cannot use the bathroom himself, cannot support his body weight, and needs help eating, dressing, etc. Sound familiar? Sad. But, they tell me it's "ok"; they know he loves them and it is returned to them daily.

I guess my "take" on this is that life doesn't give us rewards or promises. We have to learn to deal with the problems and support those in our care. NO ONE wants this life...but, it is a reality. What we ALL want is a end this suffering for everyone...until it happens, we have to do our best...and that is what we are doing...It is extremely sad that sons and daughters give up a huge part of themselves and their lives, as do spouses. For that, PD is a curse. But, so many times our parents gave up part of their lives for us, too.

Bless anyone who has PD; bless those who come here for help and understanding...
and may we all know we did our best in a horrible situation...without ANYONE being cruel or insensitive to others' journeys, I am glad we are able to say how we feel without acrimony...sometimes this is the only place one has to be able to say how he/she feels. Jane

By umajane On 2013.11.01 23:32
I am new here but since this forum is for CAREGIVERS we should be able to vent or complain. Even though it is very tough for my husband, because of the dementia he is mentally somewhat protected from reality. It is the mental pain that is difficult for me…to watch him change, to always be on call, on guard and scared to death that he may fall or get lost.
He is not feeling that anxiety and stress and stress is a silent killer as well.
So we have to take time to breathe deeply and be the best we can be as caregivers. Easy to say, hard to do!!!!

By carman96 On 2013.11.02 11:34
I feel the same way you do. My husband has dementia also and that I find the hardest to deal with.

By VioletV On 2013.11.02 22:58
I think that this forum gives us a chance to take our individual situations, hold them at arm's length, take a good look at them, and to be able to say "ah, that's what this is," and, as a bonus, to get validation of what we notice about our lives. I think there is no harm in telling ourselves the truth about what we experience. I think it strengthens us, in fact.

By LOHENGR1N On 2013.11.03 00:29
How DARE you all.....get out Your kerosene pile the wood high and burn Me at your stake for all I care! Now I'll speak for US Patients with Parkinson's Disease! Your social time is ruined? You can't go eat in a restaurant? Our food ends up everywhere....well one thing you overlook in the venting is We can't even step away from P.D. even for one minute let alone run errands. Let Me speak for Parkinson's patients you talk of stress, anxiety? We are hyper sensitive to it and it worsens our symptoms. Do We want to place our Sons, Daughters, Spouses or loved ones in the caregiver positions? Hell NO! Looking out from a disease wracked body some of these complaints seem pretty petty to Me but I do realize they are important to you let me repeat that last part because some will miss or ignore it.....I do realize they are important to you. Some here do understand the vents, getting feelings out so We aren't overwhelmed by them. However some use them as a validation to feel resentful and it can be transferred to the patient, snapping at them or harsh communication with them. We Patients are Your Mothers, Fathers, Aunts and Uncles, Brothers and Sisters, Your Loved Ones who if healthy would do anything and everything for You and have proved that over and over in life before Parkinson's and life with Parkinson's until it robbed Us of even that. Oh I know somewhere there are some exceptions to that and probably someone will chirp in and tell me about it. I know I will be accused of butting in and MAKING YOU FEEL GUILTY venting. Ever think it's your up bringing that makes the guilt when this is pointed out? That really you all know better but get caught up in the moment.

Here's another thing that will be pointed out....this is a caregivers forum....yup and why did you come here in the first place? To learn about the disease, to learn tips and shortcuts to make life easier for You loved one and yourself. To help not denigrate but to be the most helpful and caring you can be. Sometimes comments here sadden Me. Many who've been at a loss have been helped by Me and then when I speak up they turn on Me and Tell me it is a caregiver forum I should go or shut up. Many Who have left this forum ask Me why do you stay and I use to say because I can help them, explain what is happening and why to make it easier. I've come to realize lately this is less and less, many don't want tips and help they want "Oh you are so right we have it worse" or validation for actions taken. It isn't about Who's got it worse it is about caring for loved ones and making the remaining time they have left as good as each is able to.

Do you think I take all this crap from posters because I have nothing better to do with what remains of my life? Do you think I enjoy this? I'm not one of the posters who pop in post something then watch what happens until they're bored and do it again. Let Me set the record straight here......I am here because of YOUR loved Ones! Plain and simple (there are caregivers Whom I do care about deeply too) but it's Your loved ones I here to help any way I can from medication issues to motor symptoms to disease progression. That is why I'm here, that is why I hang on and THAT is why I answer questions from those who have harsh statement to make to me and want me to shut up until I'm spoken to. Well I've said enough I've butted into your rants and vents again but it isn't a competition folks it is a life and death struggle to ease the life of Your loved ones. Well that's it have at me. Because as we all know I'm the only one here who's not welcome to vent on anything!

By Grammy7 On 2013.11.03 01:52
Lohengrin You do help me in knowing how my husband would feel if he were aware of his condition. He is not able to talk or communicate in any way. I know his life is not what he ever wanted or expected. Parkinson's is just not easy to live with but most definitely not easy for the one with the disease. My frustrations come from the fact I really wish this all would go away and we could go back to our blissfully happy life. I know many of you have been dealing with this for many years. Our time with this disease has only been 4 years. It has just been a fast progression. I feel I am doing everything I possibly can and it is just not enough..... This forum is a help to me. I do relate to so many of the caregivers yet I appreciate the comments from those with PD. I feel we all need a place to vent and everyone should appreciate others point of view.

By carman96 On 2013.11.03 05:54
Al, I don't think anyone is telling you to shut up. Don't you know I would do anything to take this suffering away from my husband? Our whole lives revolve around PD. Do I resent it? Hell yes. Do I take it out on husband? Absolutely not! If I complain about our lack of social life I am thinking of all the things he is missing. Do I have a pity party for myself occasionally? Sure. But 99 percent of the time I am taking care of his needs. I love my husband, I took vows "in sickness and in health as long as we both shall live" and that is what I will do.
Isn't it better that we complain here than to our PWP?
Also, no one should have to take abuse from anyone. Having PD is not an excuse. No Al, I am not talking about you, but others here who have had problems with this.

By VioletV On 2013.11.03 09:43
Oh Al, I'm hoping that what I've said did not suggest that I blame my PWP husband. As I often say to him, Parkinson's affects both of us. And, while I can't really say that I KNEW what I was getting in to, I married my sweetheart knowing he was many years into PD. So, I sorta volunteered for this.

As I told him (and questioning friends), he's the person I should have been married to 20 years ago, and if PD is part of the package so be it.

That being said, it's not easy, and I know how it hurt him to see his brother and s-i-l being able to travel, and having adventures, while we face the limitations of PD. I too feel those limitations, and talking about them here brings them down to size, lets me know that I am not unique, that struggles are part of a realistic grown-up life.

Most of all, I know that he can't take even a 5 minute break from PD. We count it a triumph when he gets relief from constipation, when I can help, with massage, to relieve tremor in the middle of the night, or when a good conversation, or walloping me at Words With Friends (or getting walloped -- it does happen), restores a moment of normalcy.

So no. PLEASE don't shut up, Al. We value your insights, and caring, and those of everyone here.

By jcoff012 On 2013.11.03 11:21
What a difficult life we all lead, both caregivers and PWP. That is a fact.

One thing we learned at the sudden death of our oldest daughter, life can change in an instant. Life is never the same. We are thrust into a different life journey. Statistics show that 83 percent of marriages fail when parents lose a child suddenly. I have yet to learn the statistics on the effect of the sudden dx of PD on a marriage. However, in many ways PD is a slow death for everyone.

That said, I am glad Al spoke for the PWP. I am sure Steve is reading this, too. I feel for anyone who has to deal with PD, I really do. We have the unique perspective of years of decline with Carl's Mom, and now PD is in our own home.

We now have the added burden of knowing PD may become part of our BILs, SILs, and our own children and grandchildren's lives...we DO worry about the possibility of a familial link. Trust me, that worry is paramount in our lives. Is it possible that I will have to face my children with the disease and become yet again, a caregiver? Does my husband worry he may have passed this on? Hell, yes. It IS a worry, and one that no parent should have to face. It never leaves our discussions of PD. Just another burden for my husband. One I wish I could take from him.

Everyone needs a place to talk with those who understand. However, as I have alluded to in the past, my biggest concern is that if your PWP could read these posts would he/she be ok with them, or would they hurt them to the core? I see the posts did that to Al, and Al, for that I am sorry...You are right...I came here for answers, for help. You welcomed me warmly, guided me and never tell me how dumbly I react, although you come close! lolol

As always, let's lighten up the load here...We ALL need to laugh and laugh loudly EVERY is cathartic...when things are the worst, we need to let go...Please give it a try!

If you want to laugh and cry, go see "Last Vegas" is a joy to watch five of the finest actors/actresses of our is funny, but touchingly sad...and I am glad we went, but I would have gone alone if I had is only 1 1/2 hours long, so try to go see won't be sorry.

Hugs and love to I said, this is a great discussion and it appears everyone is thinking deeply...outstanding!

By Witsend On 2013.11.06 13:25
Wow. Thank you, everyone, for your great courage in sharing your experiences and feelings. I'm awed by all of you. This made me think of the times when the reality of my life seems to seep into my husband's consciousness. Usually it is when he has fallen and there is a mess everywhere and I am trying to keep him comfortable until he feels strong enough to get up (I have twice injured my back irreparably trying to lift him). I have to say that when it really dawns on him what my life has become, it is the saddest thing in the world.

I'm prone at times to having pity parties with myself, but I know I can never feel as bad for myself as he does for me. He will sob and say "You don't deserve this", and it just makes me hold him and love him and realize that this is so, so, so hard for him. Not just to lose his former life, but to feel that he has robbed me of my life as well. I would do anything to not have him feel that. I prefer it when he is in a state of semi-dementia, thinking he is perfectly normal and our lives are as they have always been. I don't mind complaining myself about my life, but I don't EVER want him to feel guilt or responsibility or even sadness about that. He has enough to deal with himself.

Thank you everyone for listening. I never judge here, I feel this is a place we can come to say absolutely anything about our feelings. It's the only place! I get so much from everyone, and Al, bless you for still showing up here.

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