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 New Irish Caregiver 
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post New Irish Caregiver
Hi everyone,
I am new to this forum, but not new to caregiving. I am a 44 year old mother of 3 and I have cared for both my parents, Mam 81, bed ridden, and Dad, 841/2, for the last 10 years. It was only just before Christmas this year that Dad was diagnosed with lbd, but I know he has been suffering with this illness since he had a stroke 4 years ago. I noticed a decline in his mental health, especially in the last 12 months, and luckily I did a carers course and found out about lbd. It is not well known here and Dad was initially being treated for depression!!!!! until I suggested to his doctor that it was much more than this. A geriatric psychiatrist called to the house and made the diagnosis almost immediately. He gets extremely agitated and aggressive and can be very difficult to deal with. Just this Friday, the wonderful carer who helps me out took a weeks holidays and he went crazy. He blamed my poor mother and myself for hunting her out of the house and that she will never come back. He gets like this when his routine is upset in any way. He can be quite frighetning at times, but is very feeble and not able to get about very much (which I have often thought of as a blessing in disguise, as I would be worried about him hurting my mother). I don't live with them, but go there every day and cook, clean, medicate and do all the other work that is involved in caring. I leave to collect children from school and the carer takes over. They spend the night on their own, but I have often gotten a call to drive the 7 miles to calm Dad down or help with some crisis or other. I am finding it increasingly difficult to juggle their care(my mother has a lot of health issues, including depression) and my own young family. It was a blessing to find this site and I look forward to talking with you and learning from your experiences
Ger

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cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Feb 22, 2011 5:38 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New Irish Caregiver
Ger,

Sorry you've had to join us here. Is there any way you can increase the amount of outside help for your parents? Of course you are in the middle of a big sandwich, with one side dealing with severe depression. Not fun.

Is the psychiatrist prescribing any medication for your father?

Are you familiar with the UK-based Lewy Body Society (lewybody.org)?

Robin


Tue Feb 22, 2011 5:45 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New Irish Caregiver
Hello Ger,

Welcome to the forum! Sorry for the health issues of your parents, but I am glad to see you here because there are so many wise and wonderful people who can help you with questions or just moral support! My mother was diagnosed one year ago (exactly one year today, in fact) and I found the forum over the summer. It's no exaggeration to say it has been a literal lifeline and saved my sanity so many times. It's amazing how little is known about LBD, even in the medical community. We caregivers need each other!

Best wishes,

Julianne


Tue Feb 22, 2011 5:47 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: New Irish Caregiver
Welcome. This site was literally a lifesaver when I found it. I am the sole caregiver for my 74 year old husband who has had Parkinson's since the '90's and now it has morphed into Parkinson's Disease Dementia, one of the Lewy Body Disorders. I have recieved much help from this site from others walking this path. I hope you find this helpful. I literally started on one topic and read from the beginning to the present. I found every emotion that I have had reflected here.

Smiles. Nan


Tue Feb 22, 2011 5:52 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: New Irish Caregiver
Thanks everyone,
yes, Robin, dad is on seroquel and ebixa liquid ( he won't take any meds for us so we have to disguise them in his food). The poor man thinks we are trying to poison him. We are still only at the trial and error stage, but it looks like seroquel might help, reading a lot of posts here. No. I have not heard of the UK site - I will check it out - thanks. As for extra help, I'm afraid we can't afford it. I have one sister who helps out, but I have 2 other siblings who are no help at all. Luckily, my wonderful husband is a tower of strength and a great support.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Feb 22, 2011 6:07 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New Irish Caregiver
Another welcome! My, but you have a lot of responsibilities! My heart goes out to you. My husband has also been a 'difficult' Lewy, going into rages, acting aggressively, etc. so I can fully understand your concerns. You will get lots of support and information here! 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.


Tue Feb 22, 2011 6:11 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: New Irish Caregiver
Ger wrote:
he won't take any meds for us so we have to disguise them in his food. The poor man thinks we are trying to poison him.


Poor man! Poor caregivers! When my husband was hospitalized after a head injury (long before Lewy came to live with us) he was very paranoid about his pills. He would take them from me, so the nurse would hand the little paper cup to me, I'd look them over carefully and pronounce them correct. Then he'd take them. One day my sisters were visiting and I wasn't in the room when the pills were delivered. Hubby trusted his sister-in-law more than he trusted strangers, but a little less than he trusted me. Thinking on her feet, my sis went to the nursing station and came back with a thick medication directory. She pretended to look each pill up in that book and pronounced them OK. Whew! we caregivers really have to be creative sometimes, don't we?

Welcome to the forums.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Feb 22, 2011 6:17 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: New Irish Caregiver
Ger, I also want to welcome you, one club none of us wanted to join. My husband, 70, has had LewyBody for 6 years, we guess. It is one roller coaster ride, the ups and downs are endless. You certainly have a full plate, be sure to take care of yourself. Your folks are lucky to have you.

Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Feb 22, 2011 6:54 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New Irish Caregiver
ger,
Welcome to the LBDA forums I too am sorry for your need but I think you will find much information and comfort here, you certainly have a great deal on your plate with 2 parents and 3 children to care for all their needs, I do hope you take time for you too !

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Irene Selak


Tue Feb 22, 2011 8:46 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New Irish Caregiver
I don't think Ebixa (Namenda in the US) is available here in liquid form. Neat!

Would your father tolerate the Exelon (rivastigmine) patch?


Tue Feb 22, 2011 10:49 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New Irish Caregiver
Yes, Namenda is available in liquid. Saw it on the web site.

Julianne


Wed Feb 23, 2011 12:20 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: New Irish Caregiver
thanks everyone, thanks Robin for advice, but I would not have a hope of putting a patch on him. He really believes we are trying to kill him, and won't take any meds. It has to be the stealth method we use when it comes to medicating him, and he would just tear off the patch. Thanks anyway :P

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Feb 23, 2011 10:02 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3363
Location: Vermont
Post Re: New Irish Caregiver
Welcome from me too, Ger and so sorry for your need to be here. My dad had a pain patch for several months before he died. The nurse applies it on their back where they can't reach it to pull it off. It was very helpful in controlling the pain from his infected pressure sore.
My youngest son was in college when our problems started, but even though he's much older than your children, we felt the "Sandwich Generation" tug too. (My dad lived 500 mi. from me, so I travelled A LOT for several years, trying to take care of my dad and my own family).
I know it's a really difficult path you are on. To reiterate Irene and everyone, find the time to take care of you too! 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.


Thu Feb 24, 2011 12:42 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New Irish Caregiver
My mother has a pain patch and the nurses at the SNF have learned to apply it to her back. Otherwise, she gets confused and pulls it off.

Julianne


Thu Feb 24, 2011 12:52 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: New Irish Caregiver
thanks guys, I'll discuss the patch with his doctor - I'm still waiting for her to call me back. This is so great - I no longer feel so alone on this terrible journey, and I have already learnt so much. God bless you all xx :)

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cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Feb 24, 2011 2:17 pm
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