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By lurkingforacure On 2016.10.05 10:27
Hello there, I hope I'm not too bold asking you some questions, but if I remember correctly, your husband is young-onset and you also have children at home as well. Do you mind my asking how your kids are handling all of this? Do they go to counseling, and if so, does it help?
how do you manage all the PD care on top of work, kids activities, and keeping the household going?

I have so many questions as no one I know is in the same boat as me. Thanks for any comments you care to make:)

By Busymom On 2016.10.05 15:38
Hi, I am Busymom and I am in the same boat...my husband is young onset, and we have two children ages 12 and 6, the younger one was born just before his official diagnosis, but he started showing definite symptoms when the older one was 4, so I think it's actually harder on her because she remembers when Daddy wasn't sick, and has watched this miserable decline; the little one doesn't know healthy Daddy, she leads him around like a guide dog trying to help him, but it sucks for everyone, it's just an awful awful situation. They don't go to counseling, but they do take karate, they take out their frustrations on the boards and punching bags in class.

It is so very hard, all of it...I never imagined in my early 40s I'd be dealing with this...and of course it gets worse every day as he declines more and more, both physically and mentally. He says things to the kids and they don't know whether to believe him so they look at me to see how to react...whether Daddy's having "an episode" or not...and they end up doing things like helping him stand up and stay up and not fall, and not get lost, all we do is manage Daddy...it's an effort to take him anywhere so when we do things like run errands the kids say "Aw mom, does he HAVE to come??" which is sad, especially when he hears them say that. Plus he gets very upset when they are doing anything that makes noise or is too much for his brain to handle...basically just being kids...but he can't deal with the overstimulation of rowdy kids, and then everyone gets mad and shouts at each other. Plus he wants to go everywhere and do everything we do, he won't face the fact that he just can't anymore, and that causes nothing but problems if he does go, or resentment by him if we do things without him.

How do I manage it all? Honestly I don't think I'm managing anything, I feel like everything's falling apart, and there is no help, and it's going to continue to get way worse. I work full time outside the home, and shuttle kids to their activities and have to do all the errands, shopping, cooking, yard work, everything, and I'm on my own, and none of it's getting done very well; the house has never been more of a mess, I can't seem to keep up with it, and I feel like I'm slipping further and further away from any kind of normalcy or order, and I try to keep the kids' lives as normal as possible, but that too is getting away from me. I SO wish I could get Alice from the Brady Bunch to move in with us, but nothing like that is going to happen, there's no money for anything like that, and since I still work, we don't qualify for any kind of assistance.

So we just struggle day to day and brace ourselves for the day's onslaught. I keep trying to figure out ways to simplify things or make it all easier but so far no luck on that.

It's a miserable miserable situation, and mostly any help is not geared towards young families because we are in the outer fringes, mostly these disorders occur in older folks.

Day by day...like Dory says, Just keep swimming, just keep swimming...

By LOHENGR1N On 2016.10.05 17:16
I know I'm not Daisy and for what it's worth just a couple of thoughts. Busy, when you have a second try checking out the American Parkinson's Disease Associations "Young onset" site. They may be able to help. It was put together especially for families with younger children to aid in dealing with P.D. I know it helped Me with explaining things to my children (They were 12, 10 and 4 when I was diagnosed) all those years ago. I've always been an advocate of letting us patients do as much as possible for ourselves even if it takes us longer but that's neither here nor there now in many cases. However many caregivers put so much burden upon themselves. Bare with me for a moment here, We patients have Parkinson's Disease and are not normal. We're as things stand and barring any miracles we never will be again. Oh there may be flashes of normalcy now and then or if the medicine is really working well. But they are just flashes. Yet many caregivers expect they will be able to carry on with "normal"? You can't, You worry and try to get everything done. wearing Yourselves down trying to live up to expectations of normalcy while helping your loved one. It can't be done. I may be off base with the next suggestion but yes it is expensive getting help in and many may say but we need to get away however once in awhile perhaps if a friend or neighbor could come over and do a couple loads of laundry or vacuum? Take your loved one out to a park or somewhere you'll both enjoy, normal couples have date nights go feed the ducks touch base with your loved one without the laundry running in the background or a mountain of dishes. I know it is not alone mental health time for you but it might not hurt either. I don't know I may be way off base just a suggestion or two.

By jcoff012 On 2016.10.05 18:56
Al, as always, I agree. You gave me this valuable advice years ago, and it has kept me sane. I agree, don't get in the habit of doing too much early on, or you will burn out.

Carl and I have been "lucky" because he fights PD and doesn't give in or give up...he often cannot sleep, has back pain, etc., but he is still a joy...MOST of the time! Whenever his annoying PD habits kick in, I either go in another room or confront him! Most times he tries to stop clicking his teeth or stop snoring loudly, or moaning even while he is awake! But, if starts to annoy, I simply tell him. He has come to understand because he knows the situation has gotten bad.

There are also times when he makes me crazy with his stubbornness (NOT normal), but, I step back and think "Is THIS worth a fight or worth shedding tears? Or, will I miss ANY interaction soon?"

I know no one can walk in another's shoes. Our "kids" are adults, so our true trials are with our grandkids. It breaks my heart to see them watch Grandpa failing.

Again, we have been "lucky" in that Carl is highly functioning and refuses to let PD overtake him, so PD is part of our lives, but we keep going on as if all is well. For the most part, we are managing. That's not to say all is well. We faced my stroke and hospitalization, cataract surgery for both of us, my son's DX of CHF in this last year, etc...and, we are still here!

I wish we could all manage well. PD is such a cruel disease. I hope someone can help you with your children. I do agree that kids "get it" better than we do, but, we have to be honest with them. We cannot change the reality of PD, but we can do our best to explain it for them. All they want is to know Daddy loves them...they will accept his limitations.

By makrivah On 2016.10.05 22:03
Al, your post has good advice. I would like to point out a huge difference between taking our PWP out for awhile and having some fun when only physical symptoms are involved as opposed to having fun with our PWP who also has dementia. There is little to no conversation, sometimes not much awareness of where he is, etc. Our purpose of getting away is very different when the person we care for is not really present with us. I hope this doesn't sound too negative. I only hope to point out a different situation that some of us face.

By flowers12 On 2016.10.05 22:33
When my hubby gets in a dementia state or aggitated, I take him for a ride in the car and he always becomes more alert and calms down. This has become a daily thing and it's a time when he actually will talk a little and we can comment on the things we see as we drive. We're out for about 45 minutes to an hour. When we get home he usually goes back to his withdrawn state within a 1/2 hour. I'm thankful that I've found a way to get him to calm down because it can get a little scary.

By LOHENGR1N On 2016.10.06 00:18
I understand that Mak, I thought of that as I posted. I suggested help with the house hold chores because some might find it easier than sitting with the PWP for an hour or two. As I read your reply I was thinking about Flowers reply and the calming down. We tend to question each another when interacting many times which with dementia becomes hard if not impossible. So inquisitive as I am and if like they say short term memory is next to nil at times would a short ride daily help or hurt? A window rolled down a little with the breeze coming in. Maybe a smile on the PWP face? Ride along listening to a song if we can change our expectations of conversations? Then it wouldn't matter what they are thinking, childhood memory of flying a kite on the beach, maybe young and riding a bike or just a change of the same old scenery inside the home or the yard. You the caregiver made it possible for them to get a smile, to recall happier times? Smile along with them a great big smile because even living worlds apart from each another you've touched them given them of all things a smile in the impossible life we PWP's live. And that is one major big deal! That's one huge accomplishment. I don't know maybe I'm a dreamer, a card carrying member of the order of eternal optimists, but any diversion from the disease is a victory for the moment in the war We all lose. Well I've gone on enough here for now. Hang in there

By lurkingforacure On 2016.10.06 18:47
Thanks for your input Busymom, I totally relate.

Personally, I have not found the young onset forum that helpful. It's good for helping you figure out what and how to tell the kids about PD, and how to help with various mobility issues, kind of, but the really hard stuff, when the PWP calls the kids names, or when he yells because they are playing and having fun and making noise like kids do, I feel like I'm on my own there.

What do you tell your kids when they don't want to have any friends over anymore, ever, because daddy won't shave and he scares their friends? Daddy CAN shave, but he won't. I've even offered to help but he won't let me-he's afraid I'll cut him (really? with an electric shaver?)

What do you tell your kids when they ask why daddy doesn't do anything to help around the house but he can get dressed to go have lunch with a friend in 15 minutes? And daddy CAN do lots of things to help, but won't.

How do you respond when your child tells you "daddy walks a lot better when you're not at home, mom"? That one really gave me pause.

Does daddy come to school plays, concerts, and parent/teacher meetings when he refuses to wear any kind of pad or protective underwear and accidents are a common occurrence? And I'm talking both kinds of accidents here. How do you resolve that gem of a dilemma? And it comes up again and again and again.

i know that having PD in the family means our kids don't have the "normal" childhood others do, whatever "normal" even is-but it seems like there should be a balance. Just as we accomodate my husband's PD in every way in our family, shouldn't the person with PD help out on his/her end as much as they can? Shouldn't he unload the dishwasher or put the wet laundry in the dryer? Why can't he go into his room if the kids are noisy and it bothers him, instead of yelling at them? Or does PD provide a complete pass?

I know these comments might really anger some on here and I truly mean no offense. Those of us who are caregiver+active parents have different issues and there are very few resources for us-no medicare, no state or county aging department , church outreach, nothing. Even our friends drift away.

If anyone knows of a site that addresses issues like this, please share the link:)

By VioletV On 2016.10.06 20:06
Lurking,

I've been reading, over a while, about your situation, and your husband's use of his PD diagnosis as an instrument of control.

I hope I'm not overstepping by saying this, and maybe this is my bias because of my professional life, but I think that your problem is not PD, it is abuse.

Your husband seems to be using the PD diagnosis as a way to justify being emotionally abusive to you. This link from my colleagues at the National DV hotline: http://www.thehotline.org/is-this-abuse/abuse-defined/ might be a good description of your situation.

As a start, you might call the national hotline anonymously, and just tell them about your situation. Just see if what they say gives you a sense of being understood. If so, you can then think about how you might want to re-frame your situation with your husband. If not, if it seems that this is off-base, then I apologize for adding to the stress in your life.

I'll be speaking at a national DV conference later this month, and, unless you ask me not to, I will talk, anonymously and privately of course, to one or two colleagues to get their experience in helping in cases of emotional abuse when the abuser has a chronic illness.

Maybe helpful?

VV

By lurkingforacure On 2016.10.06 21:31
Thank you Violet, I've always valued your posts throughout the years and I'm certainly not offended. I don't know that we have an abusive situation, so much as one where my husband's denial is in the way of us handling the situation better. I feel that he needs to accept where he is so that he isn't so angry and refusing to help make our situation as good as it can be. Maybe these are the same thing, I don't know. I do appreciate your input, and will check out the link.

By lurkingforacure On 2016.10.07 13:42
Violet, I looked at the link you provided and not one of those things apply to us. Before PD became our lives, my husband was a kind and peaceful and a wonderful man. He STILL is, locked inside PD. We are increasingly grappling with what I believe is his refusal to accept where he is in this disease, including the all-important limitations.

Now that PD is REALLY affecting him, and actually causing significant changes in our lives (no driving, no more stairs, accidents,) the denial is increasingly difficult. He is angry, and clinging so hard to what he knows he used to be able to do, and trying to preserve and protect the reputation and image that he worked so hard to attain. I'm familiar with the stages of grief and anger is one of the first...we just seem to be stuck in that phase and can't move past it.

I guess in a nutshell my issue is that my husband is choosing to handle his PD in ways that make life harder than it could be. Not should, but could. I realize as he progresses, the things my husband can do will decrease. But he can still do many things today, physically, and without being so grumpy at everyone.

What do I do about this? How can I help my husband move past the denial and the havoc wreaked on our family by his trying to perpetuate the illusion of good health? I have no idea, which is why I started this thread.

By flowers12 On 2016.10.07 16:35
When we moved here from the Bay Area 7 years ago, we didn't have much of a choice in Neurologists, there were only two in this area. We got an appt with the one and on the second visit on we saw the nurse practitioner who was more like a PD counselor than a neurologist. She sat us down and asked how things were going and asked specific and direct questions and gave us suggestions on how to deal with things. I think it was helpful now that I look back on it. It was an opportunity to be open and honest and talk about all the things that we were having problems with. It gave us both things to think about and prepare for what would come. That office closed and we now travel a couple of hours to see a neurologist. Now that my hubby has progressed beyond the discussion stage it's good that we see a neurologist. I guess I'm saying that perhaps there is someone at your neuorologist's office that counsels? It may or not be something you've tried but it's just a suggestion. I feel like there are no answers or solutions just our hopes.

By lurkingforacure On 2016.10.07 17:36
I wish I were joking when I tell you all that literally, just today my husband told someone he had laryngitis to explain his softer voice and difficulty speaking clearly. I am still in disbelief. We have been diagnosed with PD for over ten years and he wants me to play along like he has the laryngitis.

Maybe I'm wrong-maybe it's not denial at all, but rather some belief he subscribes to where he doesn't really have PD but a host of other issues to explain the soft voice, accidents, falls (that's the fault of our floors, I've been told, they're too sticky).

I better get out my mop tonight and get busy:)

By Busymom On 2016.10.09 21:02
Hi Lurking,
Mine does the same thing with the shaving! And his hair is crazy and clothes are stained and he stumbles around falling (more on that in a second), and of course can't tolerate the hustle and bustle of children, so my kids rarely have any friends over because daddy just can't deal with it. They go to their friends' houses, they all know my kids' daddy isn't well. I feel like we should reciprocate sometimes, but...I just can't worry about that.

He does go with us to things like school open house, parent teacher conferences, etc, because he demands to be part of everything...he THANKFULLY isn't to the point (yet!!) of accidents but he is just on the edge of it...and it's always "we need to leave, I need the bathroom..." and he can't really get his pants up on his own so he doesn't like to use public restrooms unless it's a desperate situation. I don't know what will happen when the accidents start...not sure how he's going to handle that...

Strange about walking better when you're not around...that's odd for sure...

Mine tries to help around the house, but the kids and I are rolling our eyes because we want to let him be productive but everything he does, we have to re-do. If he tries to put dishes away, I find knives with the mixing bowls, and cereal bowls with the pots and pans, etc, and if he tries to wash any dishes they always have to be re-washed because he can't really do a good job...there's no good answer there.

Also my husband falls all the time...like daily...because he won't take his meds. He's convinced they all "make him sick" and that he doesn't need any of it, he says he doesn't believe he has this disease, he thinks "they don't know what exactly is wrong with me, maybe I only need antidepressants and I'll be cured", and he says the meds aren't helping - even though they are, but he is expecting a cure from whatever he takes, which of course it won't give. Maybe the sinemet does make him nauseated a bit, etc, but I'm worried if he keeps falling like this he eventually will break a hip or worse his neck.

It's like they are just stuck in denial about the whole thing, they don't want to face the facts, don't want to admit this is real, it's like if they don't come to terms with having this disease then they can pretend it isn't really happening, and maybe like the boogeyman under the bed it will just go away...I mean, of course on the surface they don't really think that, but somewhere subconsciously if they don't admit it, it's maybe all a bad dream. That's how it seems. Maybe it's because of their age, maybe the idea of something like this happening at this point in our lives is too much to bear and they just want to ignore it like a playground bully.

Maybe they won't ever want to admit it...but it seems all we can do - the main thing that we NEED to do - is keep them and our children safe and as sane as is possible. To my hubby, I'm like "OK, keep denying it as long as you want but you can't yell at the kids like that" or "if you haven't taken your sinemet you can't come to the store with us because you will fall," just put my foot down when necessary.
Day by day...it's all I know to do...

By Daisy123 On 2016.10.11 05:33
I've been trying to get a few moments to myself to in order to answer this post for the last few days so I apologise it advance for itís general long windedness. And so many other valuable insights have been added that I'm not sure that I can add anything, well certainly nothing positive and I hate to be a harbringer of gloom.

Everyone on this site is struggling with this devastating disease either as a care partner or a patient themselves and there is no "one size fits all". I think we all realize and accept that, but I totally get what Lurking and Busymom at talking about.

It is different for those of us with small kids and impossible to manage the demands of running a household, bringing up kids and caring for a loved one who is not only unable to help or support in any way, but actually needs a huge portion of care, love, physical and emotional support themselves.

I haven't coped at all, I've lurched from one crisis to the next and still don't know if I'm doing the best for everyone or not. All I know is that Iím doing the only thing I can and that is carry on.

Dh too, showed all those weird behavioural problems even as far back as before Dx. We had our own business and he changed from someone who had a terrific ability to get along and motivate people to someone that no one could work with, he was argumentative, in flexible, uncaring. We lost so many good customers and employees and I ended up taking on more and more of his workload, that he was unable to perform and because he was making poor business decisions. Didnít attribute it to pd at the time.

However. I think that this lack of empathy has been a feature ever since and that is what the kids have missed out on most of all. Since then he has has been more of on looker to raising the kids, instead of being an active participant. After the initial honeymoon period of about a year his mobility problems were so erratic he had to be accompanied pretty much everywhere. Up to 2 years ago I was still in your shoes Busymom and Lurking ; trying to run a failing business, caring for dh, raising the kids, doing all the work (even before pd, dh was not a ďnew manĒ). and because of his cognitive decline, it took over 2 years to get him to agree that I should close our business. He just couldnít understand the fundamentals and he was loathe to end it as it defined him. As long as his business was going he was a company director. He was still telling his Drís that he was able to work fine even when he hadnít set a foot inside the place for 6 years. It just reached a point where something had to give.I read somewhere at the start that if you get PD young it will bankrupt you. I have found sadly that this has been the case for us.

It is easier with the kids now that Iím at home fulltime. They had some counselling with ďanger managementĒ and our youngest , now a teenager is not handling the changes well at the moment. People assume that after 10 years, the kids should be well adjusted to their dad having pd but they forget that every new day brings forward new sets of problems and what the kids found acceptable, when they were much younger has now become unacceptable to them. He too, gets angry at the least bit of noise, canít stand them being on their phone, doesnít want their friends over, wonít flush the loo, throws rubbish everywhere, forgets how to shave or cut his nails for weeks and insist on wearing the oldest dirtiest item he can find in the dresser.
However, counselling assumes that both parties are willing or at least able to change their behaviour. Like you say, Lurking; what happens when one party is unaware that their behaviour needs to change at all? Itís always the kids that have to compromise and that is hard to them. I am always stuck in the middle trying to keep the peace.

That is how it is with DH, he is living a a sort of semi delusional reality where he thinks he is working on a new business And his executive function is so bad that he really just rummages all day . Add to that daily hallucinations and separation anxiety to the point that he wants me there in the room with him all the time so it impossible to get time away from him.

Oh, how I wish I had the answers!

By flowers12 On 2016.10.11 11:42
Having children to care for as well as your husband is unimaginable to me. I don't think I could do it. I truly think I'll loose my mind now. But, what choice? Doomed by love and caring to live in this disease with him. We're retired and I'm home with him 24/7. Having to be with him, in his sight, all the time is like being in prison. Yesterday I went outside to rake up leaves and I had to laugh because I felt so free and was doing something so normal. Didn't last long though before he was calling me in. He uses the excuse that he has to go to the bathroom to get my attention even when he's just gone a while before. The delusions/hallucinations about working usual happen around 2 am and he rambles on and on. He was a foreman and talks about his crew. I often wonder how long a person can survive on 3 or 4 hours of sleep in snatches.

By Busymom On 2016.10.11 15:23
((Hugs!)) Hugs to you Lurking and Daisy, and Flowers too...hugs to us all who are suffering one way or another with this misery!

By Daisy123 On 2016.10.11 16:33
Right back at you and everyone. Hugs :)

By lurkingforacure On 2016.10.11 18:40
Busymom and Daisy, thank you so much for sharing. I can't tell you how much it means to me to know that I am not the only one out there barely coping and in constant reactive mode as I try to put out one fire after another.

Flowers, I don't know how long you can go with only 3-4 hours of sleep a night, but it's not long. We know that sleep deprivation/lack of restorative sleep leads to mental decline as well as a host of other health issues, there is quite a bit of research about this (and conversely, in many cases people whose cognitive abilities improved when they started getting more sleep). I don't want to scare you, but this literally is one of the things you have to get or there is no way you will be able to take care of your husband. Sleep deprivation was a form of torture during war time, for a reason.

Hugs for all of you, I'm so very grateful.

By flowers12 On 2016.10.11 22:15
What can I do? I would have to hire someone at night to be awake and able to help him to the bathroom every two hours or so and when he wakes up in a dementia state be able to deal with that. It's just an impossible situation. I asked the neurologist if he could suggest anything and he said no sleeping pills but to try melantonin at a low dose once in a while. I think it works sometimes but not always. I've never been a daytime nap person and seldom would get the chance anyway. When he does sleep in the day I try to take care of things and sometimes just cherish the few minutes of doing nothing. I wish we had family that would give me a 24 hr break once in a while but no. We just have to do what we have to do. I know one day I am going to burn out.


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