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Joined: Fri Feb 06, 2009 8:09 am
Posts: 6
Location: Australia
Post New to the Group
Hi to all the members.
I am new to the group, still struggling to come to terms with my partner's diagnosis, only last week. He was diagnosed with Parkinsons about six months ago, and LBD identified about now. Any illusions I had, or excuses I made for his increasing episodes of confusion and deteriorating general health were obliterated with the specialist word "Lewy Body Dementia- come back in four months' I felt as if I was kicked in the stomach- now what do we do? We are second time arounders- I am a lot younger than him- have since informed his family, arranged a visit to his local doctor, and then to my own, to arrange counselling. I saw my mother through Alzheimers, so I find this diagnosis very difficult to deal with. The changes have been so insidious, but now it all makes sense- the clarity at times, followed by confusion about mundane things at other times. If there is an up-side, his behaviour is quite different from my mother, who had frontal lobe dementia, and had significant behavioural challenges. He is such a sweet man, who is aware, at times, that things are not as they should be- for him, or for me. I read with interest what everyone writes. It does help. Thanks for reading.


Wed Feb 11, 2009 1:36 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Penelope,

Sorry you've had to join us. I guess the diagnosis is a good news/bad news situation, isn't it?

Great that you are getting counselling for yourself. You are dealing with a lot.

Did your mother have FTD or AD? I think of FTD and LBD as the two most challenging dementias for caregivers, though the "long goodbye" of AD would be sad too. [Have you considered getting long-term care insurance for youself? A fair amount of FTD is familial.]

You should go to lbda.org and check out the new brochure for the newly-diagnosed patient and family. It's a very good publication.

Robin


Wed Feb 11, 2009 3:22 am
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Joined: Fri Feb 06, 2009 8:09 am
Posts: 6
Location: Australia
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Hi Robin
Thank you for your welcome. My mum had AD, which was distressing enough. I am an RN, although not practising at the moment- I have looked after clients with LBD. They were much younger, and the progress was rapid, with enormous stress on the caregiver. I hope that, in our case, the progress may be a bit more gentle. I am starting to think of strategies, such as respite, for day, or a couple of weeks, depending on his eligibility. Will know more soon, after asking the right people.
We live in Australia, so the choices are different from the USA. I intend gathering as much information as possible, and then acting on it. At least I feel some sense of control over something which can be so unpredictable.
Nice talking to you.

Penelope


Wed Feb 11, 2009 3:32 am
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Joined: Fri Jan 23, 2009 11:46 pm
Posts: 10
Location: East Yorkshire, UK
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Hello Penelope, I'm sorry you are having to join this group, but it does help to talk. I cannot offer much advice at the moment as I am still comming to terms with my husbands diagnoses in Oct last year at the v young age of 44. I had so many questions to ask and got some good advice from fellow members. Hopefully now your husband can be given the right medication to help him. God Bless you both at this very difficult time. Jane xxx


Wed Feb 11, 2009 3:32 am
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Joined: Fri Jan 23, 2009 11:46 pm
Posts: 10
Location: East Yorkshire, UK
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Hi Penelope, my husband has gone down hill v rapidly and here in the UK he goes to the Dove House Hospice which has a therapies unit, once a week. He enjoyes going and I look forward to having a few hrs to myself. The First time he went I felt v guilty, but he can back happy and said how lovely it was. Check out what is available to you in your area, hopefully you will have something the same were you are. Jane xx


Wed Feb 11, 2009 3:39 am
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Joined: Fri Feb 06, 2009 8:09 am
Posts: 6
Location: Australia
Post Re: New Member
Hi Jane

Thank you for your support-dare I complain, as my partner is thirty years senior to your husband. So tough.
I have been thinking this afternoon about respite options. I think my practical self has switched itself back on, after the initial grief response. I guess there will be more of that. One day at a time. I feel better already, talking to people who know how it really is.

Penelope


Wed Feb 11, 2009 3:48 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Respite is very important -- even if it's 30 minutes every day! Hopefully you can set up something regular with friends to get out of the house and do something non-LBD related for awhile.


Wed Feb 11, 2009 4:11 am
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Joined: Fri May 11, 2007 12:54 pm
Posts: 115
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Welcome Penelope. I echo everyone else here. So sorry that you are going through this. We are all her to listen and to give you support.

Joyce K


Wed Feb 11, 2009 10:10 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Penelope,

Ditto for everything everyone else has said here. We are all on a terribly cruel, sad journey. Hopefully you will find some sound information here and at times a welcome laugh or two.

My thoughts and prayers are with you.

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Dianne C.


Wed Feb 11, 2009 1:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Welcome Penelope,
Glad you found the forums and I hope they can be a help to you and let you know there are others out there dealing with LBD and you aren't alone in this.

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Irene Selak


Wed Feb 11, 2009 5:24 pm
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Joined: Fri Feb 06, 2009 8:09 am
Posts: 6
Location: Australia
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Thank you everyone, for your warm welcome, and support. I very much appreciated. I hope, in time, I can contribute to the group, once I get my head around this- will keep you posted.

Take care
Penelope


Wed Feb 11, 2009 5:43 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dear Penelope (what a great name!) --

My husband is 23 years older than me. We've been married for nearly 21 years, and lived "in sin" for two years before that. The good side to being younger than our LOs with LBD is that we have a bit more stamina for dealing with the physical aspects of LBD as they creep up. I am in awe of the older ladies on this forum (many in their 70s and 80s!) who are handling the same thing you and I are.

Since you used the word "partner" rather than spouse, I'm assuming you two are not married. If that is the case, what provisions have been made for who will have authority for medical decisions, legal decisions, financial decisions, etc.? As your LO sounds to still be fairly with it, you two should discuss this and make appropriate legal arrangements. I'd hate for you two to assume that you will be in control only to have his children step in later and take over, cutting you out of the decision-making process. So please, be sure to legally protect whatever arrangement you two have.

As for speed of progression, early on you hope for slow. But as Jerome slips further and further over the edge, and hearing what so many others are dealing with in terms of long-term advanced-stage LBD, I will hope that the progression accelerates. If you start to think that way sometimes, please do not feel guilty -- it is very natural.

Glad you found us, even if under such challenging circumstances.

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Renata (and Jerome-in-Heaven)


Thu Feb 12, 2009 11:42 pm
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Joined: Fri Feb 06, 2009 8:09 am
Posts: 6
Location: Australia
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Hi Renata

Many thanks for your support, and suggestions. No, we are not married, but the legal and financial matters have been attended with a review pending.
I have been busy contacting an agency which provides support for either now, in the future, plus getting some counselling for myself.
I feel better now that I have taken some action. I am busy setting up a support network with his family, plus having the support of my own children, and close friends. You reflect my own fears/hopes for the future. For now, I am just going to take things on a daily/weekly basis, and deal with the changes as they occur. At least, now, I have made myself aware that we do not have to face this on own. It sounds as if you have got a tough time on your hands. Take care
Penelope


Fri Feb 13, 2009 2:30 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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raffcons wrote:
The good side to being younger than our LOs with LBD is that we have a bit more stamina for dealing with the physical aspects of LBD as they creep up. I am in awe of the older ladies on this forum (many in their 70s and 80s!) who are handling the same thing you and I are.


Renata,
This always amazes me too, I was 14 yrs younger than my husband and that is what helped me in caring for him, if I was an age of some of these caregivers I am sure I couldn't have done it ,age does present a challenge to say the least and my "Hats off to these older caregivers", I am always in awe of them!

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Irene Selak


Fri Feb 13, 2009 8:37 am
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Joined: Fri Feb 06, 2009 8:09 am
Posts: 6
Location: Australia
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Hi mm

We live on the Sunshine Coast, Queensland- about 2000 kilometres north of Sydney. It is a great place to live.

Thank you for you understanding. We are having a few good days at the moment- I am grateful, but I find the variations in LO's health quite confusing. Trying to rebalance myself- I guess it will take time.

Best wishes

Penelope


Sun Feb 15, 2009 12:43 am
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