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 Hi from Eaton Rapids, MI 
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Hi from Eaton Rapids, MI
My name is Beth and my husband was diagnosed with LBD in March 2012 and is in the moderate stage of the disease. We were living in Florida when he was diagnosed, but moved to Michigan about a month ago so that I could be near my family for support. Now he is going to be evaluated for placement in a nursing home because he has become too much for me to handle on my own. While his cognitive functions fluctuate, it amazes me how much help he needs with bathing, shaving, brushing his teeth and dressing. He also is having more and more incontinence, so I have him in Depends 24/7 now. He also has become more overbearing and combative, which makes me wonder if this disease is sort of like alcohol....in that it intensifies such personality traits. My husband has spent most of the past week in bed, stating that he is really tired and needs to catch up on his sleep; and because I am so exhausted from trying to keep him "entertained," I am not pushing him to stay out of bed. Perhaps when he gets set up with a pulmonologist and finally gets set up with a C-Pap (for his severe sleep Apnea), his tiredness will dissipate a bit. But as it is now, I can't help but believe that he is giving up. Surprisingly he has agreed to be placed in a nursing home, but I don't know what I'll do if we can't afford to do this, because I feel like I am at the end of my rope. I've often heard it said that I should take care of myself first, but how do I do that when I live with someone who depends on me so much for all of his care?

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Beth


Sun Jun 03, 2012 12:20 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Hi from Eaton Rapids, MI
Welcome, Beth. I'm glad you have family for support. You'll get a lot of support here, too. I'm glad you found us.

Have you found a new LBD specialist in your area yet? Perhaps some adjustments in medication could help at this time.

Almost nobody can afford long term care indefinitely. Have you looked into Medicaid?

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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


Sun Jun 03, 2012 3:21 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Hi from Eaton Rapids, MI
Beth, have you contacted anyone from the government to get information about nursing home eligibility, costs, etc.? You might want to look at www.michigan.gov/miseniors for a start. Probably it would be helpful to know where you stand and what to expect.

Sorry you are facing this.

Julianne


Sun Jun 03, 2012 9:43 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: Hi from Eaton Rapids, MI
Hi Beth - sorry for your need to be here. It sounds like placement in a NH or ALF is going to be in the best interest of both of you. It does become physically impossible for most folks to take care of their LO at home when they get to the later stages of this disease. And, of course, if you are up and down all night and doing all or most of the CGing all day, your own health is very likely to suffer.
His sleeping more could mean various things, so it's good that you are getting his sleep patterns evaluated. If he is in later stages of the disease the amount of time he sleeps will get longer. Is he still eating a normal amount and maintaining weight? If not, that is very important info. for his dr. to know also.
You say you think he is "giving up" which implies at least a somewhat conscious decision. If he does have LBD or one of the many dementia illnesses, all of this is out of his control. The disease is taking over and he is unable to control thoughts and actions, no matter what he may have wanted to do prior to the disease.
I hope he is under good medical care so that if there is med. that could help some of his symptoms, he can get on the right drugs in the appropriate dosage(s) asap.
Come back for support and info. as often as you need to. Lynn

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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.


Sun Jun 03, 2012 9:45 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hi from Eaton Rapids, MI
Beth, I'm so glad you found the forum as we all need the support of those who are living the same nightmare. My husband is in a nursing home now but for years we endured the same exhausting existence you are experiencing. I think the hardest part was seeing my loving husband turn paranoid and combative. My life's love and closest companion became somebody else, like Dr. Jekyll and Mr. Hyde. It broke my heart.

I sold our two-story house on a river and moved us to a one-story house in a retirement community nearer our children and had the house remodeled to meet our needs and convenience.

Lack of sleep was chronic but it was my back injuries that finally forced me to place him. He was admitted as a two-person transfer at the SNF and I wondered why my back was sore! And they use machines! I am an RN and know all about safe transfers, body mechanics, etc. But when he would get rigid and unable to move it was difficult.

I visit him every day and perform some of his personal care [when he will allow it] and feed him. Even though he takes Seroquel, he hallucinates a lot and is constantly delusional. He is still sometimes combative with the staff but his Seroquel was increased and it has helped. He seems glad to see me when I arrive, which makes me very happy. :P

I hope you will find some support and advice near where you live to help you to help yourself as well as your husband. There is nothing easy about this disease.

_________________
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.


Sun Jun 03, 2012 10:11 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hi from Eaton Rapids, MI
Hi Beth,
Sorry you've had to join us here. You might consider finding a local Alzheimer's support group as they can be of help to you since you've just moved to Michigan.
Robin


Sun Jun 03, 2012 1:20 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hi from Eaton Rapids, MI
Beth,
Welcome to the forums a place no one wants to be but glad they find. I am sure the recent move has some to do with his recent changes and I also think finding out with the state where you stand and finding out what kind of help is available !

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Irene Selak


Sun Jun 03, 2012 6:56 pm
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Joined: Fri Jan 13, 2012 11:51 am
Posts: 43
Post Re: Hi from Eaton Rapids, MI
Welcome Beth!
It's great that you are tracking his sleep habits. Does he seem depressed? I've learned from many members on this board that many LO's suffer from depression as well, and it can be treated. Might be worth mentioning to his doc's.

~Heidi


Mon Jun 04, 2012 3:37 pm
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Hi from Eaton Rapids, MI
Hi Everybody:

Thanks for all of your replies to my post. For those who recommended that I check into getting Medicaid for my husband, I was told by an attorney in Florida that my husband doesn't qualify because he makes too much money with his pension; because, even though his ex-wife gets half of his pension, Medicaid considers his whole pension, which puts his income above the cap.

And for those who recommended checking into medication for his behavior, that's on my list to discuss with his new neurologist when we see him next week. This week he'll be meeting his new internal medicine doctor, who I'm told is familiar with working with dementia patients.

Today, the physical therapist from the home health care agency came out to see my husband and my husband didn't want to cooperate with this gentleman. And, of course, the physical therapist wants me to make sure that my husband is doing his exercises....something that is going to cause more conflict between us, especially when he doesn't want to do them.

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Beth


Mon Jun 04, 2012 11:01 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Hi from Eaton Rapids, MI
Indeed, arguments about exercise and PT seem to be #1, according to caregivers in our local support group. Based upon hearing about this couple's conflict, my suggestion is to avoid arguments on this topic at all cost. Whether your husband does them or not is his choice.


Mon Jun 04, 2012 11:12 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Hi from Eaton Rapids, MI
Hi Beth,

I was suggesting that you check in with your county aging benefits agency (or whatever it is called there, you should be able to figure it out from the state web site) not just because of Medicaid but because of other types of assistance and advice that may be available.

Good luck,

Julianne


Tue Jun 05, 2012 9:04 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Hi from Eaton Rapids, MI
Hi, Beth!
You are now among friends who understand.
I agree with Robin completely. What has worked for me with my husband is, whenever I have a choice, to always choose the lesser stressor. Keeping stress as low as possible seems to help.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue Jun 05, 2012 5:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: Hi from Eaton Rapids, MI
I'll chime in too and say that at some point, our LOs with this disease either don't want to cooperate or cannot cooperate with the PTs and OTs, and they just don't do the exercises on their own. Once my dad had used up his medical ins. coverage for PT when he first moved into the ALF, I said "no more". He was frustrated and didn't want to exercise on his own and it seemed like a ridiculous out of pocket expense for something that wasn't helping at all. All that was happening is that everyone was very frustrated, so we stopped. He did not want to walk anymore, just wanted to be in his wheelchair, and anything that the PT tried to do to strengthen his legs was met with anger and inability. Not a good situation. Better to just let go of some of these things that we think are "helping". 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.


Tue Jun 05, 2012 7:52 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hi from Eaton Rapids, MI
I agree that PT isn't worth fighting for. If he doesn't want to do it, so be it. They will probably discharge him for lack of cooperation and/or lack of 'progress'. So be it. BTDT.

_________________
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 Jun 05, 2012 11:22 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: Hi from Eaton Rapids, MI
You are so right. I've developed a sort of indicator about the various health care professionals we deal with: if they want me to "make sure" my husband is doing something--exercises, using a C-Pap for apnea, etc--they don't know what Lewy is like. With our original dx my hb's neurologist told me to keep to a routine and not insist on "the small stuff". We work hard to make the days predictable and to reduce irritation to a minimum. It was good advice for us, it was clear early that my hb had entered a rapid-moving stage of Lewy. Looking back he had been exhibiting increasing symptoms for years, especially the fluctuating cognition and loss of executive function. Two years ago everything accelerated. The second time his driving almost killed us I managed to get the dx. He had already had a couple scary incidents where he got lost on the freeway, and it was a relief to me when he lost his license. I had to lock up the keys, but within 6 months he was in a moderate stage of the disease, and now, just over a year later, his last mini mental was 0. He likely has only a year or two left. Each of us CGs has to figure out what's best for our own LO's condition, and that includes what kind of compliance to aim for. It's a heart-breaking condition and imposes many heart-breaking choices. If you choose based on making your LO's life as pleasant as possible for the time remaining to him or her, you've done the best you can.


Thu Jun 07, 2012 11:06 pm
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