For those who care for someone with Parkinson's disease
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Topic "Are you going to travel?" Go to previous topic Go to next topic Go to higher level

By Witsend On 2013.02.21 12:21
I'm retiring next week. I'm 55, my husband is 77, dx'd over 12 years ago. I'm only retiring at this age so I can stay home and take care of him. His disease is not nearly as advanced as many, but he's rapidly declining.

This forum is the only place where I can see that others understand my life. I have never read anything on here that made me think, "Wow, that's weird!" because I've been through virtually all of it. Although there are incidents that I haven't experienced with my husband, I know it's just that I haven't experienced them YET.

Since I know you all understand this journey we're all on, I just need a place to express my sorrow everytime someone I work with says "Lucky you! Retiring so young! Are you going to travel now?" It got to the point where every time someone said it, I was breaking into tears. (I'd like to leave this place after 20 years with SOME dignity intact, so it was very upsetting to me).

A good work friend gave me some excellent advice. She said that when people say things like that, I should just make s**t up. "Tell them yes, you're going to travel the world, climb Mount Everest, join the Senior PGA Tour, become a fashion model, and finally fulfill your dream of writing the great American novel." That advice has probably saved my sanity, and of course, no one really cares what I'm going to be doing anyway.

But it still disturbs me when people tell me how jealous they are that I'm retiring. And I know they mean it. I just need to let it go, because there's no way they could know my deal.

Bless you all and thank you for being here, you have helped me (and my husband, even though he knows nothing about this forum) more than you will ever know.


By jcoff012 On 2013.02.21 13:04
Your name says it all! ;)

One thing we have learned...after a year or two, no one will ask; life goes on and they move on. So, don't stress over it! I have been on Facebook a LONG time, but do not mention PD because we know most folks have their own problems...most of my FB "friends" don't even know my husband has PD!

So, although it hurts for the time, know you are retiring for a fantastically needed new "job". Another thing, as Al first told me on this board, do what makes you happy as long as you can...if he is able to travel, do so...might not be Hawaii, but it could be a day trip or to visit relatives so you can have a break!

And, most importantly...congratulations on retirement..I retired at 52 and will be 65 in July and haven't looked back!

Again, welcome! I am online a lot this morning as we are preparing for a trip ourselves...takes him longer to pack, etc.! Others will be on soon!

Hugs and congrats! Happy Retirement! Jane

By blue2 On 2013.02.21 13:07
I am so sorry you aren't able to retire with the joyful anticipation we all probably expected and society/media tells us we should have. It is truly heartbreaking and you have my sympathy and empathy.
I am 59, my husband is 72. I left my career of 25 years in 2008. My husband was dx with PD 12 years ago. His PD is advanced; he uses a wheelchair, needs assistance with all personal care, and has dementia and hallucinations.
I am happy for all my friends and family who can travel and do "normal" things couples do. I am also envious and can get to feeling pretty sorry for myself and for us.
I tell you this just to let you know you are not alone in your experience and feelings. I know there will be better times ahead and even moments of joy. I wish you much comfort and hope this forum remains a source of friendship and compassion.

By lurkingforacure On 2013.02.21 13:41
I'm really sorry for you, too. To be perfectly honest, I think if I were in your shoes, I'd be thinking, "what am I retiring to? I'm really just swapping up one full-time job for another, that of full-time caregiver, that is not exactly a retirement"...

But, there it is. So, again, if it were me, I would be thinking and planning of how you are going to fill the days, you dont' want to retire and find yourself sitting around waiting to wipe up the next spill, and your husband would not want that, either. So I would be thinking of some activities that you can do together, and some that are just for you, to keep your sanity. I find that gardening heals a host of hurts, and the garden is always there, and always needs work!

As for those clueless folks, well, try to avoid them in the first place! If you can't, then try to let their comments just roll off of you. We can't control what people say, but we can control how we let it affect us.

By karolinakitty On 2013.02.21 21:56
Jaycee... boy can I relate... I am 54 ..had to "retire" 5 years ago, oh boy!!!! retire before 50..lucky can do whatever you want....whenever you didn't ven seem to matter to anyone that I was retiring without a pension, without insurance, with only a simple One person disability check to support two of us...the need to caregive overtook the need for money and perfect retirement....

So as you walk into this eyes wide open here ya go...

you and I are fairly healthy...get involved ...while you may not be a "mouth" like me....every little voice in our advocacy for PD is added to another... to another...

Don't make PD your life but make it a rewarding part....You both can be a big part....depending on where you are retiring I bet I could put you in touch with lots of people to get you going...
Nope.. I'm not a recruiter, although I probably sound like

Even though we have been through some real tough times in our walk with PD ... I found the advocating and travel meeting others in the same boat..helping those new to this demon...has been very rewarding and takes my mind off the bad parts, keeping me focused and on my toes!!!!

Let me know if you want to get involved..even in a very small's all a help!!!!!

By parkinit On 2013.02.22 19:01
Yes, I can relate, too. I basically did the same thing, but retired before the PD became too bad, so did get to travel a bit before he needed the 24/7 care he needs now.

Just smile politely and say, "I'll be checking some things off my bucket list!" and walk away. If they persist, answer, "some peace, quiet and rest is first on my list!" They are just trying to possibly engage you in conversation in their own way, so don't take it personal, and "this too shall pass."

I agree that you should have plans for some personal time, so DO look forward to it. I'm a big believer in DAILY LISTS. They are my mini-goal charts. I still like to feel like I am accomplishing something each and every day, so those lists are gold for me! Also, those books you've been wanting to read, check them out of the library and read them! That morning exercise program can now be started. Taking more time with meals - done!

Sometimes it is the little things we must find pleasure in and learn how to slow down and simply enjoy the small pleasures in each and every day as we stand by our spouses, arm ourselves in battle and fight this awful disease.

By GladIhavehorses On 2013.02.23 22:01
I know a friend who also had to retire early because of her husbands health even though it wasn't Parkinson's. What she did was that she got a PUPPY. Yes a puppy. They both worked so much and never had time for a pet. So she got a puppy. She said it was the best thing she ever did. The puppy gave them numerous moments of laughter and was a delightful distraction from the caregiving role. Her husband developed a surprizing will to live and look forward to waking early to take the puppy out for a walk and play. As she put it, " It put life back in our home instead of death." She also felt when time comes , the dog will be a valuable companion when faceing living alone.
Just a thought.

By carman96 On 2013.02.24 09:03
Most people just say things that pop into their head. My aunt who was a nun once said to me "there are two kinds of people. Those that talk before they think and those who think before they talk." Unfortunately I am usually the first kind and have put my foot in my mouth many times!
Lately I have been telling people about my husbands PD. If they don't want to hear it then I guess they won't ask me how I am doing again. Most of them do ask how my hubby is doing the next time they see me. I usually just tell them that the Parkinson's is "progressing"
I think that most people really do care how you are doing but if they don't well tough! I have listened many times to others health problems because I know we all have our crosses to bear and sometimes you just need to talk about it. Others are more private and you don't know what they are going through.
I hope you do find some enjoyment in your retirement. This group has helped me immensely just to know that I am not alone in this journey.

By carman96 On 2013.02.24 09:16
About dogs--we have two big spoiled brats! I can't imagine my life without dogs. I have thought about getting my husband a helper dog but don't know if cognitively he could keep up with the ongoing training that is required. Also it would be hard on my dogs to get used to a dog that is trained since we have spoiled them so much! Also they are getting older so don't know how they would react.

By GladIhavehorses On 2013.02.24 11:01
Two years ago I aquired a Mini Doxie. That sweet LITTLE dog is glued to my hubby. As soon as he sits she jumps on his lap. It is nice to see him sitting in his recliner looking out the window calmly patting the dog, looking like he doesn't have a care in the world. She is good company for him while I am away from home or out doors.
Our 2 out door Chocolate Labs follow him everywhere. So when he decides to go for a walk in the woods, I know they are with him and won't leave his side.

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