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Guest Meeshelly

I'm new with online caregiver help

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Guest Meeshelly

I am a caregiver. My husband will be 64. I am 52. He retired when he was 60 and two months before retirement he was diagnosed with PD. I don't have much support. My kids are all grown and moved away with the exception of one who is 19 years old. I don't have any friends, I don't have a social life and I am very stressed at work, too many people retired this year and I am taking on the job of 3 people, running my house, taking care of my husband. I am reaching out for help to anyone that I can talk to and get support for the symptoms and stages my husband will be going through with PD. I feel embarrassed to say that I get very stressed and down in the dumps when I am around my husband because of his facial masking. It brings me down. I find it hard because when you have been with someone for 20 years and all of the sudden it seems like their facial expression seems angry or stressed. He also stares into nowhere and seems quite disconnected. He plays piano and is having a hard time playing in public (he plays at nursing homes) because his shake gets so bad. His left hand is starting to curl, and in the past week he has started sitting at an angle when resting. He slouches to the right. I was reading that this is called "Pisa syndrome". His overall posture is getting stooped and he appears shorter than what he is. I want to know if this seems like he is progressing faster now or is this kind of a regular pace for these PD symptoms? I just need some guidance and reassurance because I feel guilty for feeling angry at times. I can't seem to help it.

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Meeshelly, welcome to the forum - you will meet many amazing folks here and get lots of support. I am a 64 year old parkie and my best suggestion is to get your DH into a social/exercise program like Rock Steady Boxing - it has improved my life immensely. Just being with people who understand is so helpful. Care partners are special people - I don't know how you do it, but we are so grateful for all you do. We all feel stressed and angry - life wasn't supposed to be like this! God bless you both Twitch

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Guest Meeshelly

After reading more Posts in the caregiver forum I question whether I am really a caregiver right now - some comments said that just because someone is diagnosed with PD and you are their spouse, does that make you their caregiver even though they are still functioning on their own? and that at what point do you actually become their caregiver? The point they were making is that you are not the caregiver until they are unable to function for themselves. So now I feel like I posted too early in the caregiver forum and wish I could delete my original post. I feel this way because my spouse is fully functioning on his own.

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Guest Meeshelly

I guess I am in the wrong forum for what I want to talk about

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Meeshelly,

 

You might find more support on the open forum where many spouses regularly discuss the issues you bring up.  It will help your husband (and you) if you can postpone the caregiver role as long as possible and work on accepting his symptoms of PD that, yes, can seem like indifference to all that you are doing to keep your household together.  Since you are working, is your husband handling the housework, shopping, dinner preparations etc.?  If he is functioning on his own than these responsibilities will help him maintain his independence. 

 

You don't mention anything about his treatment.  Is he on medication and if so, is it helping?

 

Best of luck, Gardener

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Care giving comes in different stages.  When you are at the very beginning stage you will have lots of questions and this is the correct forum for you to be on but be warned.  You may not like what you read because it's coming from people like me who are at an advanced stage so it might make your anxieties worse.   PD is different for everyone.  In my mom's case she didn't take a turn for the worse until about year 5 of diagnosis and dementia set in.   If you don't rush the care giving and try to plan too way ahead then i think you will do alright to adapt to what's to come.  Your DH really need to keep himself busy and do what he can for himself for now.   Depression can set in if he doesn't and then it's even more work for you.  You have a full plate as it is and it can only get worse in time.   Be good to yourself and do what you have to do for his condition now.  Please keep posting and many of us will try and provide support. 

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After reading more Posts in the caregiver forum I question whether I am really a caregiver right now - some comments said that just because someone is diagnosed with PD and you are their spouse, does that make you their caregiver even though they are still functioning on their own? and that at what point do you actually become their caregiver? The point they were making is that you are not the caregiver until they are unable to function for themselves. So now I feel like I posted too early in the caregiver forum and wish I could delete my original post. I feel this way because my spouse is fully functioning on his own.

Nah, you're in the right place.  We are all in the same boat, some are just a little further from shore...

 

Welcome.  We're all glad you found us.  If you are seeing facial masking, withdrawal, and cutting off of activities you are a care-giver.  Sorry.  You were a CG when you married your spouse.  As was he.  So there. 

 

It seems like social isolation is a lot of the problem.  You are at work, stressed from overwork, and he is at home, losing contact with many things that kept him moving.  You come home from a long day and tell him about your day and get a 'stone' face.  It seems he doesn't care, he doesn't react.  That used to (okay, still does, but I'm working on that) drive me crazy.  That's a hard thing.  Have you ever talked to him about the effects of his facial msking on the people around him?  That may help.  Is he on meds?

 

Again welcome, and this is the forum where you can talk about anything that affects your life because of PD.

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Yay!! Miracle to the rescue!  I was hoping you would post to help her.  You've worked through so much with your mom.  I think your advice above is very good, as are Twitch's, Gardiner's, and Quietstill's.

 

Welcome, Meeshelly.  You've come to a great place.  Lots of advice, support, and care offered.  :-)

Edited by Linda Garren
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This group is so warm and welcoming, I wasn't sure l belonged here at first either! You will find us supportive of your issues and concerns and we in turn will benefit from your wisdom and adjustments in the future. My husband also has vascular dementia, is fully mobile but has extreme fatigue. He requires daily monitoring for his extensive medications and l manage all household requirements. He can still be left alone, thank god, so l have some freedoms still. Try and find something for you to recharge your energy, know that others care.

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i do hope more people will ask questions AND contribute with advice at the same time.  I've seen too many people post here just to get help but does not provide any feed backs to help others going through the same journey.  It benefits everyone when it's a give and take environment.

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Completely agree, Miracleseeker.  There seems to be more interest and effort put into responding to politics, religion and other issues that are not PD related.  There is a tremendous amount of Parkinson's disease knowledge, insight and experience among members of this forum.  People new to the disease as well as people reaching different stages are hungry for information.  All too often, only a handful of members respond to those seeking answers.  We can do better (that includes me).  Gardener

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Meeshelly - 

Anyplace you find help and/or comfort is the right place in this forum.  The first thing I railed against about my DH's PD is the fact that it "stole his smile" - damn PD!  I knew it (the smile that I so loved to see) was still there when I stared deeply into his bottomless blue eyes, but even he said he hated pictures of himself because that wasn't him looking back.  While I'm sure we're both adjusting to the "new expressions" I do think the Azilect has helped some and I know physical exercise is critical.  We are all caregivers in relationships so don't spend any more time on that detail, and don't underestimate your DH"s interest and ability to take care of you too.  You might just be pleasantly surprised at what he can and wants to do.  Marriage isn't easy but it IS worthwhile if you like AND love your spouse and I sense you do, just like me.  (BTW - I also empathize with not having "lots" of support - DH and I were never blessed with children, I am an only child, my Mom is 92 and all other parents are dead, DH has a twin brother who lives 4+ hours away, no spouse or children.  Doesn't ultimately matter, we just have to reach out to others and while that's not easy for either of us, we're learning to do it.)  Hang in there, get some MDS help if you can and keep reading and posting.

Best,

LHG

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Support is so hard to come by.  I can't get my siblings to help me with mom under any circumstances.  It is so hard to do it alone so anxiety builds and I feel hopeless a lot of the times.  It's a damn if you do and damn if you don't situation.  So many nights I wish I can close my eyes and when I wake up my mom is healthy again.  Have you noticed everything goes downhill as we age?  However your life is right now it will be better than what's to come.  At least that's my life right now.

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Support is so hard to come by.  I can't get my siblings to help me with mom under any circumstances.  It is so hard to do it alone so anxiety builds and I feel hopeless a lot of the times.  It's a damn if you do and damn if you don't situation.  So many nights I wish I can close my eyes and when I wake up my mom is healthy again.  Have you noticed everything goes downhill as we age?  However your life is right now it will be better than what's to come.  At least that's my life right now.

I hear the frustration in your response, oh how l wish you had the support you need. About the anxiety, this is what l am experiencing now too. My husband is clueless as to what is in store for progression of PD, but l know full well what could happen. I just try to make each day the best as you do.

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MeeShelly,

 

You are in the right place and yes you are a caregiver. My DW is mobile, still works some and boy do I still have to do a lot because of the cognitive problems. I do have a lot of support, yet now that the kids are out of school I see a lot fewer people I also quit asking people over since her executive function is terrible and a meal made by her is a crap shoot as to how it will be put together. Financially it is a problem as you are probably finding out, so get your finances in order, will, power-of-attorney, retirement plans, insurance, etc.. That will give you some peace of mind, one less thing to deal with as things get worse down the road and he is not able to help decide due to depression, apathy, or cognitive problems, none of which may occur. One wise man told me that if you have seen one person with PD you have seen one person with PD. What someone may experience another may not. I do understand about the smile, my DW regained her smile two years ago following DBS (deep brain stimulation) surgery, it is now gone again and she does comment on it also. She is 52 and I first noticed signs in September of 2001 with a diagnosis in 2004. There are also other groups on facebook and places like Yahoo you can join also.

 

Coach T

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Love your pic Pathfinder.  :-P

 

Thank you! My friends and I went to dinner and our photographer hobbyist took pics and made them into Glamour Shots! We had so much fun with that!

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I agree!  Gorgeous, Pathfinder.  :-)  You look like a model![/quote

 

No way Linda! The app made all the difference, thank you for your compliment. We get our pics taken once a month after dinner, the photographer is so awesome. I always use her pics on FB too.

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MeeShelly,

 

You are in the right place and yes you are a caregiver. My DW is mobile, still works some and boy do I still have to do a lot because of the cognitive problems. I do have a lot of support, yet now that the kids are out of school I see a lot fewer people I also quit asking people over since her executive function is terrible and a meal made by her is a crap shoot as to how it will be put together. Financially it is a problem as you are probably finding out, so get your finances in order, will, power-of-attorney, retirement plans, insurance, etc.. That will give you some peace of mind, one less thing to deal with as things get worse down the road and he is not able to help decide due to depression, apathy, or cognitive problems, none of which may occur. One wise man told me that if you have seen one person with PD you have seen one person with PD. What someone may experience another may not. I do understand about the smile, my DW regained her smile two years ago following DBS (deep brain stimulation) surgery, it is now gone again and she does comment on it also. She is 52 and I first noticed signs in September of 2001 with a diagnosis in 2004. There are also other groups on facebook and places like Yahoo you can join also.

 

Coach T

Great advice! I need to get started on getting our "legal" house in order. Where to start? I keep putting it off, but l have to do this, it is as important as any other aspect of dealing with these health issues.

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