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 Partner, not Parent 
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Joined: Sun Dec 15, 2013 9:36 pm
Posts: 3
Location: Chandler, AZ
Post Partner, not Parent
In June of 2011, my life partner at the age of 71 was diagnosed with PD followed with a dx of probable Lewy Body a month or two later. An evaluation by a Neuropsychologist in January 2012 confirmed the LBD. Against doctors suggestions, my partner continued to drive and work until January 2013. After getting lost on a familiar route home, we suspended his driving. Until this illness, this man was energetic, dynamic, and highly intelligent. He was a contractor, owned several businesses, was a private pilot, etc. He now follows me around the house, or sits in a chair drooling and staring into space.

As my mother suffered with PD I saw things he did and suspected Parkinson's many years before the dx. Two doctors told me I was wrong. He had very active dreams beginning in 2006, screaming, kicking, falling out of bed. His hands shook in the morning. He began to shuffle instead of lifting his feet, his senses of taste and smell became diminished, he would sometimes have a blank stare. He would have trouble retrieving common words in conversation and his voice became husky (his GP sent him to an ENT when I voiced these concerns).

I'm looking forward to sharing my thoughts and hearing from others on this site.


Sat Dec 28, 2013 12:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Partner, not Parent
Welcome to the forum. Sorry you have to be here but glad you found us and hope you will gain support and insight. Try to read as many past threads as possible as it will give you an idea of what others are going through or have gone through. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Dec 28, 2013 3:05 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Partner, not Parent
Welcome to the forum. You are literally among thousands of us who are caring for or have cared for our LOs who have Parkinson's/LBD. You may want to first read topics that are of immediate interest to you and take in as much info. as you can. CGing for a person with this terrible disease does mean that at some point you will be more like a parent to the person than a spouse, partner, child, etc. As the person becomes more heavily dependent on you for everything, it's important to have a place to go for support and information. This forum was a great help to me when my role switched from "adult child" to "parent of parent". It is really hard to go through that role reversal and the daily caregiving chores as they become more difficult. Come back often for support, help, advice, whatever you need. Take care of yourself too, as you will not be much help to your LO if you become sick. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Dec 28, 2013 5:24 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Partner, not Parent
Welcome Stellargramma! It's always sad to hear someone else has to go through this but you'll find this website a great place to vent (which you need to do regularly for your own health reasons!) and to find out information or just to hear that others are dealing with similar issues so you are not alone in this!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Dec 31, 2013 2:14 pm
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Joined: Tue Oct 09, 2012 11:29 pm
Posts: 10
Location: North Bonneville, WA
Post Re: Partner, not Parent
When I read the title of your post, "Partner, Not Parent", it really grabbed me. I think that is one of the hardest things, is feeling like I have to parent my husband. It makes it hard to feel intimate when you have been being mother all day. It is hard not to have the person I have always shared my fears with be the focus of my fears. I miss the person he used to be, I miss our closeness and our relationship. I need to find ways to be able to feel more like we are partners. I am an RN, and a sort of natural caregiver anyway, but Mike (my husband) has always been the person I could go to to be cared for. Selfishly, I miss that. Oh well. It is what it is.

_________________
Diana (53), married 32 years to Mike (57). His symptoms started probably around 2008, we started knowing something was for sure going on in 2011. LBD dx made March 2014.


Sun Jan 26, 2014 11:15 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Partner, not Parent
You are so right! It is what it is and it is really a bummer! Lewy Body (along with the other dementias) is a long, slow good-bye. (someone said that) You are grieving for you husband and it is a very had process to go through because he's gone but he's not gone. Treat yourself kindly and enjoy the good times. That's all we can do to get through this...

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Thu Jan 30, 2014 2:37 am
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Joined: Wed Jan 08, 2014 11:32 am
Posts: 20
Location: Canada
Post Re: Partner, not Parent
I too am caring for a partner, not parent. My 59 year old wife and I (52) are about 14 months into this journey and yes, it changes the relationship from partner to caregiver. She has made the comment that we're friends now, no longer mates and that is an accurate statement. She wonders when I am going to leave as a result of all of this and I simply point to my ring finger - for better, for worse as a reminder for her.

I believe we are never given any more than we can handle and therefore, I can handle this; you can too! But we don't have to do it alone (although most times I feel I am alone with this, a topic of discussion for another time). I have found this site and the amazing people who are on it a great source of inspiration, support and thoughtfulness!

We're all in this together; be well and be encouraged,

Alan


Thu Jan 30, 2014 11:42 am
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Joined: Mon Jan 27, 2014 11:05 pm
Posts: 12
Post Re: Partner, not Parent
I often times forget I am married. Some people think I am my husbands caregiver not his wife because he has aged so much. I get tired of having to make absolutely every decision on my own. It is a lonely job being a caregiver, the only people who understand are other caregivers. It is great there are places like this where people can talk, wish we could give and get hugs.
Mary


Thu Jan 30, 2014 1:13 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Partner, not Parent
Quote:
It is a lonely job being a caregiver, the only people who understand are other caregivers.


Mary, truer words were never spoken!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jan 30, 2014 1:54 pm
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Joined: Fri Apr 05, 2013 6:34 pm
Posts: 17
Post Re: Partner, not Parent
The subject line of this topic caught my eye. I have been struggling with this feeling of being a parent again. One ear open all night, planning all our activities, making all the decisions (sometimes ones that I have to fight my husband on), even having to say "NO" more and more. My husband acts like a teenager when I tell him plans have changed, or that I can't take him somewhere, or that he can't have the chain saw. I have been dealing with this with my counselor, who helps me keep it in perspective, and reminds me of the humor in it... :)
:lol:


Sun Feb 09, 2014 1:01 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Partner, not Parent
Good to hear! And I think it helps to remember you're dealing with a disease and your LO had absolutely no control over that!...

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Sun Feb 09, 2014 7:43 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 67
Location: Canada, Ontario
Post Re: Partner, not Parent
When I have any difficulty with my LO's behaviour I just blame it on that guy "Lewy". He is the one responsible for all this. I know it is not what my husband would have chosen to do if he had the choise. Try to find the humour in all situations, trust in God and you will be o.k. Anne


Wed Feb 12, 2014 6:34 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Partner, not Parent
Maybe we should make 'Lewy' dart boards! 8)

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Feb 12, 2014 6:40 pm
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Joined: Mon Jan 27, 2014 11:05 pm
Posts: 12
Post Re: Partner, not Parent
Pat,
I would buy those dart boards. Maybe I could buy a few and but them on the bathroom doors so my husband could fine the bathroom.
Keep smiling
Mary


Wed Feb 12, 2014 9:45 pm
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