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By parisvug On 2015.09.22 01:59
I need help! My husband has early onset PD, and it is progressing fast! He is now forgetting what meds he has taken, and keeps reading on the internet how the stage of his PD is now causing dementia. I am currently a special ed teacher, finishing up my masters, trying to deal with a daughter going to school in another location, and it is overwhelming. I feel terrible that I don't know what to do to help him. I feel that I have dropped the ball in understanding the disease fully, and what this is going to do to our family and future. I am mad, because we were suppose to grow old together. I am angry because we were suppose to travel. I am angry because he can't backpack like he used to. This is a guy that handled crisis management for group homes. This isn't fair and I just need to vent to someone. Our house is a mess, I don't have time to deal with it, our eating habits have gone down the tubes ever since our daughter went away to school. I just feel like we are in survival mode right now, but not really doing anything proactive. Advice, anyone?

By Wifey On 2015.09.22 14:55
I hear you. My husband doesn't have early onset, but we are very limited in what we can do as a couple, and I go through bouts of anger (which I hide from him) and sadness. Hugs.

By junipersage On 2015.09.22 14:58
((Hugs)), parisvug. You are dealing with a lot.

Survival mode is not a bad place to be. I mean, sure, it feels like hell, but you are doing exactly what you need to to conserve your energy. Messy house - so what? Eating habits, oh well. I'm so, so familiar with all the guilt as a mom and a wife that comes with not having a handle on those things. My yard doesn't get weeded, I just returned a library book six months late, and here's one for you - I forgot to remind my senior-in-high school-son (okay, this one was his fault too) to turn in the check for his cap and gown....and so he never got his cap and gown...and then couldn't participate in his graduation ceremony!!! I felt like the worst mom in the world, but what can I say? We are trying to hold down the fort and track my husband's meds, appointments with his neurologist, etc. etc. You know the drill. Sometimes there's just not bandwidth for everything, and I'm doing what I can. You and I have enough on our plate without the added guilt about things we're letting go. Having a vacuumed carpet is just not my priority at the moment, and I don't think it should be. In fact, just last night, my husband asked me to watch a movie with him, and I pushed the vacuum out of the way (again) and sat down with him instead of getting to the stairs, which are covered in cat hair, because you know what? Carpet (and cat hair, unfortunately) will always be there. But he may not. So clean house, you lose.

I'm a planner, so if others have advice about being proactive I'm eager to hear, but right now I feel like the best I can do is, as you say, just survive and respond to what comes day by day, and know that that is enough. I'm also someone who responds to stress by doing lots of research - but I'm not sure anyone in the world understands this disease fully. So I, too, feel angry and frustrated that I don't know how to help my husband, but I promise you're not dropping the ball. You're doing what you can, and we're just stuck in a difficult situation that is just really, really hard, watching someone we love suffer and at the same time feeling our own grief about the plans and hopes we had that are turning out differently than what we imagined.

So vent away, sister. I think everyone here gets it. Sending you lots of supportive thoughts.

By VioletV On 2015.09.22 19:09
Oh Parisvug,
I so understand. Don't have time for a long response -- but I too feel that sense of loss -- my husband is 80 and has had PD for 20 years. Advanced age doesn't make it any better. He is very healthy apart from PD and without this rotten disease we'd be traveling and enjoying concerts and movies, or just going for a walk with the dog...

Make sure that he has a good doctor who is a specialist in movement disorders, so that you don't have to be the one doing all the figuring out. You will have enough to do with being the only one to manage the PD itself.

Make sure that friends and family know that there IS something they can do to help. Vacuum a rug, run errands, take the dog to the vet, rake the leaves...

And make sure, most of all, that you take time for yourself. Find 5 minutes, or an hour or whatever you can squeeze in where you can be your top priority.

Come back here often. This supportive and loving community keeps me sane as a caregiver. I hope it can do the same for you.

VV

By Trusting On 2015.09.22 23:23
We hear you; Go ahead and scream b/c we won't tell anyone. I've been angry, on overload and am thankful I don't have any children at home anymore that would put more on my plate.

I see some of you telling her to ask for help. I agree, don't be afraid to ask for help, but don't be surprised if your request go unheeded. I hate it when people say "let me know if there is anything you need." I tell them the biggest thing they could do is to come get my husband with PD and take him out for a few hours and let me have some me time. If I leave the house for grocery shopping etc I always feel like I have to rush to get back home to him. People always say they will come get him but they never do. Hang in there and scream. You are in a safe place.

By exhausted wife On 2015.09.23 20:50
I am also new to this forum, here because I an exhausted, bitter, just plain ready to give up myself. I work fulltime (insurance benefits), but use our retirement money for someone to stay with my husband during the day. At night, the calls, the requests, the anger if I do not respond immediately, have all rendered me a sobbing mess. I am the wicked, wicked wife. What have you all done?

By lurkingforacure On 2015.09.23 22:20
Same place as you, unfortunately. All I know to do is take one day at a time. We have young kids, advancing PD husband (no need to elaborate, you all get it), I do everything in and around the house and work too, feel like I'm going to explode several times a day, and on and on. Sometimes I'm surprised that I haven't had a stroke and wonder how I'm still alive, how sad is that?

For those who are at the breaking point, your body will force you to get rest if you don't take care of yourself. Get some help, because working all day and then trying to caretake all night is simply not sustainable. Can you look into having help part of the day, so they can stay part of the night as well? Can you find alternate caregivers so they share time with your husband, maybe even take him out of the house, so that you can get a break at home?

I hope you can get some rest soon:)

By carman96 On 2015.09.25 00:08
I often feel overwhelmed with responsibility. My paperwork is a mess. Can't get organized and I forget to do important things.I feel like I can never catch up with anything around the house, or errands, etc. My husband needs 24/7 supervision, so I am always getting interrupted, and never finish anything.
It's driving me crazy right now.

By carman96 On 2015.09.25 09:42
I guess my last post wasn't very helpful. One of the most important things is managing medication. I have the alarm set on my phone to remind me to give him his pills. I had to take over filling the pillbox and giving them to him several years ago. They have a lot of medication dispensers with alarms, etc that can make it easier to remember pill time.
Does your husband have a good movement disorder specialist? If he is worried about Dementia they can test him. Maybe he doesn't have it at all. If there are early signs of it, there is some medication that could help.
It's so difficult to be proactive when you have so many responsibilities. Survival mode is good. That means you will survive.
You have a right to be angry, but that takes a lot of energy. Hang in there.

By Daybyday On 2015.09.25 21:51
I can so identify with all that is being said on this thread. My hubby and I have had a pretty bad few days this week. 2 or 3 arguments. Our communication is just NOT what it used to be. He has such trouble annunciating his words and I have a tough time understanding him. If I happen to not hear him, let alone understand him, he loses his temper. Yes, we're a fine pair. Other than that it seems every task that used to be so simple is such a mountain to us now. For example, getting a new front door knob. Sounds simple. We hire a guy to put it in and move the old deadbolt to a different door but when it comes to programming the new lock to match our house key, hubby thinks he can do it. He watches the video and I say go ahead. It doesn't work. He gets embarrassed, I can't show anger, etc.. Lordy...so many weird things with this disease. I couldn't have said no don't do it because then I look like a wife who has no confidence in her husband and his ability. Stuck between a rock and a hard place. He said he KNEW he could do it. All my intuition said to not let him do it. I said let the handyman do it but he wanted to do it. I was so mad. I left the house and went for a walk to calm down. This may sound small but so many things like this keep happening and cumulatively, it just wears on you. Socially, it's very difficult. He is embarrassed to have anyone see his tremor so we get more and more isolated it seems. I work part time but I worry with him home those few hrs alone. He has little outside interaction besides a talk here and there with our neighbor's. Came home to find his ice cream in the frig. He no longer wants to attend our monthly support Grp mtgs so I go alone. Even then he doesn't like me being out and I too feel like I always have to hurry back home. Never get to just relax and do all the things I would like to do. Anyway, just wanted to add my 2 cents. Feels good to vent to someone. Family just doesn't understand it seems. Many don't know much about this disease. It needs so much more attention & funding to get some progress towards a cure. Wouldn't that be great. Just ANY significant advancement would be wonderful. Sorry to hear Dr. Oliver Sacks died, he cared so. I may have to start drinking.

By bksquared On 2015.09.26 00:52
Do not judge me until you have walked in my shoes. On this site we are all walking the same path. We do not judge but empathize with each other. As caregivers each day is not lived but survived. I agree there are no simple tasks since PD has made daily living complex and a challenge for the care recipient and the giver. By the end of a day I feel like the children's song. Worms, worms first you bite the head off, then you suck the goo out, then you throw the skin away.
Nothing is trivial anymore. We continually fight 2-3 in a day would seem like a peace accord. It is continual bickering and yelling over inconsequential things. Where is the second loaf of bread? Can cause a war if I provide an answer he does not want to hear. Or why did I make his lunch date with his friends that conflicts with a meeting I had scheduled. Like I would call his friends? Only to be told not to go to my meeting so I could drive him to lunch.
I need to get a car to Arizona. I invited him to come with me on a road trip like we used to do. He thought about it and then responded. My legs are going to cramp, I will be bored, I will need to stop for the bathroom, I will need to eat. You can only drive for 3-4 hrs a day. And you will just get angry at me. Based on his positive attitude I am driving by myself. So now the fun part -- what to do with him while I drive for 5-6 days. He is too well and independent for a respite placement. He tends to daily living tasks and feeds himself breakfast and lunch. If a companion service is hired, how many hours. Basically they will watch him sit in a chair and stare at the ceiling, or stare at his computer. He has a pendant to get help. No one can protect him from falling.
As said above there are no simple tasks just great big problems that drain us of energy and life. I already drink and take meds to cope - what is next. Knowing I am not along keeps me out to the psychic ward.

By bksquared On 2015.09.26 00:52
Do not judge me until you have walked in my shoes. On this site we are all walking the same path. We do not judge but empathize with each other. As caregivers each day is not lived but survived. I agree there are no simple tasks since PD has made daily living complex and a challenge for the care recipient and the giver. By the end of a day I feel like the children's song. Worms, worms first you bite the head off, then you suck the goo out, then you throw the skin away.
Nothing is trivial anymore. We continually fight 2-3 in a day would seem like a peace accord. It is continual bickering and yelling over inconsequential things. Where is the second loaf of bread? Can cause a war if I provide an answer he does not want to hear. Or why did I make his lunch date with his friends that conflicts with a meeting I had scheduled. Like I would call his friends? Only to be told not to go to my meeting so I could drive him to lunch.
I need to get a car to Arizona. I invited him to come with me on a road trip like we used to do. He thought about it and then responded. My legs are going to cramp, I will be bored, I will need to stop for the bathroom, I will need to eat. You can only drive for 3-4 hrs a day. And you will just get angry at me. Based on his positive attitude I am driving by myself. So now the fun part -- what to do with him while I drive for 5-6 days. He is too well and independent for a respite placement. He tends to daily living tasks and feeds himself breakfast and lunch. If a companion service is hired, how many hours. Basically they will watch him sit in a chair and stare at the ceiling, or stare at his computer. He has a pendant to get help. No one can protect him from falling.
As said above there are no simple tasks just great big problems that drain us of energy and life. I already drink and take meds to cope - what is next. Knowing I am not along keeps me out to the psychic ward.

By ResistanceFutil On 2015.09.26 11:06
My husband took a four-hour memory test and was told he does not have dementia. The "no dementia" may have sealed the deal on his subsequent MSA diagnosis, as dementia Is rarely present with MSA. I am glad to know he doesn't have dementia.

However, his executive function skills are badly deteriorated and I get things such as a lock put on a cattle alley gate that can be only opened on one side, takes two or more hands, and is very complicated. There are dozens of these poor judgment fiascos that have made life as I know it quite difficult and at times dangerous for me and himself. And, he insists on using a chain saw and driving an old tractor (not a new easy to drive one).

At my insistence, we are now in negotiations to sell our country property and yesterday leased an apartment in our former city. With MSA the physical deterioration could become quite rapid. But while he is as healthy as he is, we need a much simpler life where we are both protected as much as possible from the worsening cognitive function, and his inability to recognize it and/or accept it.

By lurkingforacure On 2015.09.26 14:49
We have sadly entered the phase of leaving daddy at home when the kids have activities because it is simply too dangerous to take him-he can't do it. This is different from him not going by choice because he used to work, or had plans with his friends, or just didn't want to go. Now he wants to go because he has so little to do and I know how bored he must be. But he just cannot physically manage it (and sometimes, as we have found, if he insists on going and goes, we spend the entire time keeping him from falling, watching over him, making sure he is ok, etc). It is so difficult that we just quit doing things, but that's not fair to the kids.

He hasn't ridden a bike in almost a year and the last time he tried he fell over and could not balance, it was so scary. So today when our youngest wanted to go on a bike ride, I figured this would not be an issue, but apparently it is. He is not happy about our going without him, but he cannot ride a bike, much less navigate one around other bikers, cars, or people walking their dogs. I had to make the horrible decision to go without him.

Now he is mad that he didn't go, mad that he can't ride, and even madder than there are going to be an increasing number and frequency of kids activities that he doesn't get to do. I'm sorry for all of that, I wish there was something I could do to change things. But I don't know that it is fair for our kids to sit at home all day every day- they have activities to try, skills to develop, and milestones to reach and that is not going to happen sitting at home day after day.

I don't know how to deal with this other than apologize that he isn't able to go and suffer his anger. It's hard on the kids, too, the whole thing sucks. And we have years before the kids will be out of the house. No easy answers:(

By exhausted wife On 2015.09.27 11:12
To Lurkingforacure.

It takes a long time for some to realize that they can no longer do some tasks. I hated to but put the end to driving, bicycles and other balance issues. But I did find a battery operated adult tricycle that my husband can use, although to a limited extent.

Sometimes those afflicted have no idea how much the caretakers must do during a simple excursion. It helps it they are rested. And medicated. And I always carry a large bid or two for restaurants. On really long excursions I insist he use a Depends. And the Apokyn injections help in an emergency.

By exhausted wife On 2015.09.27 11:14
I carry a BIB or two.

By brainstorm On 2015.09.28 23:01
I can completely relate to all of your stories.

This is a terrible disease that can turn the most organized and planned person crazy. I learnt while taking care of my mother, that I had to let go of things in order to keep my sanity. I used to be a planner and was always organized. Suddenly, I could no longer plan anything. I was angry for a long time initially because it wreaked havoc in our lives, my career went down the tube, my siblings couldn't care less about what was going on with my Mum and therefore me, they never kept in touch afraid that they would be asked to pitch in financially. I sometimes have flashbacks and wonder how I managed to keep going for so long without help until the last years of her life. My mother needed constant care in the last 5 years. There were times, I could only go grocery shopping at night after I put her in bed, but it was always rush rush rush. I had to get back within 90 minutes, etc.

I feel like I have PTSD even though it's been 2 years since she left me for heaven.

I can tell you my house was a mess, my paperwork was ignored, my bills were paid late at times because I would forget or misplace the paperwork. My credit was completely shot and I couldn't care less.

What I did care about was that my mother was clean at all times, fed well, and her medications were management really well. We went out whenever we could which got less and less as time went by but we still managed to squeeze in our "ice cream time" once a week with the help of a caregiver. As a child, my parents would take me out for an ice cream and a Sunday drive. So I used to do the same for Mum and it was our special time that she loved. But that too had to end because I could no longer get her out of the house even with help. Even when we went out I had to make sure I had a bag of poise pads, wipes, creams, gloves, chlorox wipes, etc. with me, extra set of clothing, BIBS!, towels, with us.

So please do not beat yourself up over a messy house, etc. I so empathize with your situation. Venting is good.

Blessings to you all.

By Mary556 On 2015.09.29 01:40
Dear Brainstorm, your dear Mum is surely smiling on you from heaven. I'm sorry for your loss of her physical presence. Thank you for your words of wisdom tonight. You have just given me a second wind, a needed boost. Ice cream and time together are very important. Little acts of love and tenderness, comforting our loved ones is very important.

The voices of everyone in this thread have been resonating with me these last few days. You all are remembered in my prayers. I wanted to add something of my own but it feels too big.

For now, this is my two cents: let slide what what you need to let slide, but try to keep up with cleaning your kitchen before you go to sleep... lest you get a mouse.


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