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 Keeping our loved ones at home as long as possible 
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Keeping our loved ones at home as long as possible
As earlier posts demonstrate, the amount of help you get from family/friends/paid help is a major factor in the decision to keep or place. I was 24/7 with no outside help except for a health aide lady who came once a week for 4 hours, and even that was very helpful as I could go do errands.

My husband is/was a tall strong man, and I am short and not-so-strong, and age 70. The game changer came when he could no longer cooperate in getting up/down, shower, toilet, etc. I quite literally could not physically help him without his cooperation and effort. Also, he fell a lot, which he still does at the facility, but they have carpet and he hasn't hurt himself yet. They asked if he should be accompanied every time he walked, and I said no, you can't avoid all risks in life and he is unlikely to hurt himself. That problem is being slowly solved as he spends more time sitting and less time walking. Sitting brings it's own problems, of course.


Thu Jun 30, 2011 1:07 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: Keeping our loved ones at home as long as possible
Oh, Ger,

I'm sorry you are so close to losing your father, but also happy for the relief it will give both of you. You, your mom and your family must be really torn right now.

When I was young, I felt guilty when relief seeped in each time I lost a grandparent with dementia. But no more. Now I understand that it is the rest our LO needs and we should let them "go home" with our best wishes. I hope someone does the same for me when it is my turn.

You have worked so hard to take care of him, your mom and your family. You deserve a medal.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Jul 01, 2011 1:51 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Keeping our loved ones at home as long as possible
We visited my daughter-in-law's mother and stepfather on our vacation last week. The stepfather's father had Parkinson's and AD. He was being cared for in his home by a son. To give him a three week vacation a daughter who lives some distance away planned to stay with him one week, and the other two weeks would be in respite care in a nursing home. The gentleman was on hospice care.

My friends got the call last week that he died in the nursing home. The daughter was quite distressed. They had no idea he was that close to the end and it was never their intention to have him in the nursing home to die. She expressed her distress to a priest who was there, "But he wanted to die at home!" and the priest said gently, "We don't always get what we want."

And I thought, boy, isn't that the truth! And in particular we don't always get what we want from our children, nor should we. I want very, very much to have grandchildren. Neither son is going to make that happen for me. As much as I want it, I would be appalled if either would consider being a parent because I want it! (I do have step grandchildren, which is great, too.) Some parents want their child to follow a certain career path, or marry or not marry a certain person. But few of us feel compelled to give our parents what they want at the cost of our own self-interest or our own individuality.

We all want many things. And none of us gets everything we want. It is sad, but it is just the way the universe runs, and need not be a source of guilt.

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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 Jul 05, 2011 9:32 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Keeping our loved ones at home as long as possible
We definitely need to make a change in how my mom is cared for. She falls frequently, sometimes several times a day. She recently began trying to go out the front door in the middle of the night (she explained that she wanted to see the midgets--hallucination maybe?). She is cared for at home by my dad who is 10 years older, hard of hearing, and has back and heart problems. His doctor told him that he absolutely may not help her up anymore, but I think he still tries.

The worst is that she insists on taking a bath before bed, but she increasingly can't get out of the tub by herself. Dad just installed a door alarm that has flashing lights and shakes the bed, so he's confident he'll know when she tries to leave to see the midgets again. He didn't wake up the first time she tried it, but my sister was staying there while her home was being renovated and caught her in the act. After my sister moved back home, I stayed there until Dad got the alarm installed. He's also going to try to keep her from taking baths, possibly blocking the bathtub.

I asked Dad if he's ready to put her in assisted living, and he said "no" quite adamantly. He is ready to hire a caregiver to stay the night and help her shower and get dressed in the morning. He has long term care insurance and has asked me to come with him to meet with the insurance agent to discuss how best to use it.

He read that some lbd patients can live up to 20 years after diagnosis, so he keeps repeating that number and is afraid to use that insurance too soon. I told him I don't expect more than one more Christmas with her, but maybe I'm wrong. I know it won't be 20 years, though. I really doubt 5 or even 3 the way things are going.


Tue Jul 05, 2011 11:36 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Keeping our loved ones at home as long as possible
Sandwichmom, yes, you definitely need to make a change. I am so glad to hear that Dad is willing to bring help in. That should make a really big difference to them both. It will be good for you to hear the specifics of the insurance, too.

Have her symptoms been discussed with her doctor? (Going out to see the midgets, falling more frequently.) You may get some relief from med adjustments. Is it time for a wheelchair?

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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 Jul 05, 2011 11:46 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Keeping our loved ones at home as long as possible
We see her neurologist next month, so we'll tell him about these new developments then. My dad wants him to tell us how much longer Mom has to live, but I don't think he will be able to predict that. I really don't think she'll use a wheelchair willingly yet. She won't use the walker we got for her. She doesn't seem concerned about falling at all. It's scary. I told Dad I can't take care of her in my home anymore because I can't block my stairs, and I'm so afraid she'll fall down them if I'm not watching her every second. At least if I take care of her in her own home, she can't fall down stairs, and she's more likely to take a nap.


Wed Jul 06, 2011 3:32 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Keeping our loved ones at home as long as possible
Sandwichmom,
Yes change is in the future, Has anyone thought about these new walk in tubs, not sure if it could be an option but I have heard many good things about them but even with that it doesn't solve all the future issues ahead and No I don't think anyone can really predict your Mom's illness in time she has left!

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Irene Selak


Sun Jul 10, 2011 1:04 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Keeping our loved ones at home as long as possible
We got a walk-in tub last month, and we love it. I wish we had done it several years ago.

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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 Jul 10, 2011 2:13 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Keeping our loved ones at home as long as possible
A walk-in tub is a good idea. I will tell my dad about it. Today we met with his long term care insurance representative. It looks like my dad is going to hire a caregiver to come in several hours a day for a month or so and then evaluate whether that's enough or if he needs to put her in a memory care facility. He thinks now that he just needs someone to help bathe and dress her in the morning, regular breaks so that he can do things around the house or run errands, and someone to help lift her when she falls and can't get up. My sister, aunt, and I all live within 10 miles and can help with the lifting for now because even though she falls a lot, she can usually help get herself back up. We can also help give my dad breaks, along with the senior center's respite program. When toileting becomes an issue, I think she'll go to a facility. Dad has had to clean up a few messes when she hasn't made it to the toilet in time in the morning, but it hasn't been to the point that he feels he can't handle it yet.


Wed Jul 13, 2011 6:35 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Keeping our loved ones at home as long as possible
SandwichMom, I am copying here a post I made in January:
---------------------
Initially Coy fell down frequently -- often more than once a day. He takes a blood thinner and even slight bumps cause bruises -- he was one massive black-and-blue mark. I sometimes needed help getting him up off the floor. He had a walker but in his case it was utterly useless. When he fell it would go tumbling out from under him. After about 6 months his primary care provider authorized a wheel chair. I expected resistance because hubby resisted using the walker (who could blame him) but it turned out he liked the wheelchair. Finally he could scoot around the house without fear of falling. This was good for his spirits.

I began to observe closely the nature of his falls. It did not appear that he lost his balance or that his unsteady gait was to blame. Instead his legs and arms very suddenly refused to work. He couldn't stay upright and he couldn't grasp the walker. I described this to his behavioral neurologist who said it sounded like narcoleptic-type episodes, where his body suddenly fell asleep even though his mind was still awake. He prescribed a drug used for narcolepsy, Provigil.

Oh my goodness! This is our miracle drug! Instead of falling several times a day hubby now goes months without falling. The wheelchair is handy for outings that would require a lot of walking (museums, the fair, etc.), but because of stamina issues, not problems falling. He not only is back to walking, but he bowls with a senior league once a week!

I have had to appeal insurance decisions to deny coverage for this drug more than once, but have been successful, with the doctor's support.

I don't mean to suggest that this is the most common cause of falling among LBD patients, but it is definitely one possible cause, and it is a problem that can be addressed with medication. I'm not sure how widely known it is among doctors who don't specialize in treating LBD, so I think it worthwhile for caregivers to be aware of it.
---------------------

SandwhichMom, if it is possible to closely observe the pattern of the falls, a careful description might help the doctor next month come up with the best treatment plan. It is worth a shot.

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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


Thu Jul 14, 2011 12:31 am
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Keeping our loved ones at home as long as possible
JeanneG,
Thank you for your input on the falls. I told my dad about what you said. We take her to her primary care physician next week. It does seem that she loses her balance, though. Dad says she's "teetery." But she is also at a point where we have to tell her to move her feet to start walking. Sometimes we have to tap her foot or lift her leg to initiate movement. I'm less than five feet tall and small framed, so it's hard when I have to literally put my arms under her armpits to move her around. I have two good friends who are nurses (one a CNA who works in a nursing home and one an ER nurse). They said they would train me how to lift and move her properly so that I don't hurt myself.


Thu Jul 14, 2011 12:08 pm
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Joined: Mon Sep 06, 2010 9:28 am
Posts: 5
Post Re: Keeping our loved ones at home as long as possible
I have to admit that I have not been back to the computer since I initially started this topic. I ended up getting sick, and one thing leading to another, I'm just now getting back to some kind of routine. I have to THANK all of you who have posted to the subject. You have given me great insight to what is probably in our future.

My hubby's condition has deteriorated pretty rapidly in the last week. Everytime this happens, I know he will never be any better. As heart breaking as it is, I also know that we are no where near the "end". I know it's going to get a lot worse, and can't imagine how hard it is going to be to watch his decline.

After I got sick (an infection that my system couldn't fight because I was so emotionally, mentally, and physically exhausted), I was pretty much given an ultimatum that I HAD to hire help to come in EVERY DAY. It has been a good thing. I found a couple of ladies who have some experience with elder dementia care, and they will do ANYTHING.....clean the toilets, cook, give personal care to Jerry.....whatever we need at the moment. It has been a blessing to say the least.

I cannot tell you all how much I appreciate you all sharing your experiences. I read the posts and marvel at how much we all have in common. As things get worse here, I will find much comfort in your support. Thank you again for taking you time to write. It has been a great help to me.


Mon Jul 18, 2011 11:23 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Keeping our loved ones at home as long as possible
Sorry to hear about your illness but glad that the silver lining is you have found some great helpers.

I can't say enough good things about the forum and the kind souls who contribute. They were my lifeline for the first year plus after my mother's diagnosis.

Julianne


Mon Jul 18, 2011 12:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Keeping our loved ones at home as long as possible
I am glad that you are better, and also glad that you posted about your illness. Often it can take a trauma with our own health before we really understand and implement the phrase "take care of yourself". We really cannot do our LOs any good if we are sick. Hopefully some of the CGs out there who are not taking care of themselves will learn from you.
Heading to the cardiologist tomorrow myself, which is my life-sentence from being so stressed out dealing with my dad and all his issues 1.5 yr. ago. If I had it to do over again, I'd find some way of taking better care of myself while I was taking care of him.
Big hugs to all you CGs out there, 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.


Tue Jul 19, 2011 1:20 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Keeping our loved ones at home as long as possible
Shalomichs, so glad you have daily help now and I pray you are on the mend. Yes, caregiving totally depletes our resources and weakens our immune systems. It is small wonder that one of three caregivers die before their afflicted spouses.

_________________
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 Jul 19, 2011 3:00 pm
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