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 Another big decline 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Another big decline
Well, he wrote all these possibilities in a letter to my dad's primary care person as possible diagnoses.

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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 27, 2010 4:35 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Another big decline
Just spent a few hours reading about ALS and it doesn't seem like that's very likely, but then, I'm not a dr. As bad as everything else is with my dad, I'd think he'd be experiencing swallowing and breathing problems by now and he hasn't had either one of those issues, yet.
Talked with my younger son tonight about the possibility that his grandfather may not know him. Poor kids - their other grandmother just had a stroke and heart attack a couple of days ago, and she isn't doing well.

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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 27, 2010 9:41 pm
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Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
Post Re: Another big decline
Lynn, so sorry about other family members and their health problems. I hope things go well during your visit.


Thu Jul 29, 2010 6:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Another big decline
Thanks Amanda. Their dad's mother seems to be doing better and will actually be getting out of rehab in a week or so to go home. 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.


Thu Jul 29, 2010 9:37 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Another big decline
Wow, Lynn. Tough week!
I'm glad you talked with your sons. It's inevitable that they would have seen what was happening but now that you've prepared them they'll be ready for what they experience. Keep talking with them and tell them stories about their grandfather, both now and your memories. I tried desperately to hang onto memories of my grandparents in the good years and I did. Not all of my sisters and cousins were old enough to even remember the good years. And the more information your sons have about the years before they were even born, the more they will have to share with and ask questions of their grandfather - even if he can't answer. If there are no sports on when your sons visit (like that's ever going to happen) how about bring some family pictures with you - some old ones from old photo albums. One of the best memories I have of my grandfather in his Alzheimer days was when he went through a photo album that had pictures from his youth. He couldn't have told you what day it was, but he named and told us stories of every classmate he had, pointing to them in an all-school (one room) photo. I treasure that memory.
Your oldest son sounds like he's in a good spot to give you moral support. Maybe you could have him help you just by letting you vent for a few minutes when you call him. Just be sure you tell him you don't expect him to do anything - just listen.
Sorry to hear about your mother-in-law. But what a great recovery! Even if you don't talk about it, it's great for your family to see and experience a recovery, especially in a grandparent.
Do take care of yourself while you take care of everyone else. Even if it's just a "Calgon take me away" moment.

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]


Thu Jul 29, 2010 10:31 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Another big decline
About that ALS vs LBD vs that whole list you mentioned... if Mom's diagnosis had been thrown out based on whether her toes curled or not, she might never have been told she had LBD. Her toes were straightened (hammer toes) more than 10 years ago.
I don't think that all symptoms of a disease show up in all people anymore than all behaviors show up in all dementia patients in the same way. I think that "medical science" is a misnomer. Medicine, especially diagnostic medicine, is more of an art when it is done well. Basically, the diagnostician is finding or being told about only some of the symptoms (no one can exhibit all symptoms at all times) and then, out of the thousands of illnesses out there, choosing one or two that match up with what he/she is seeing. It's an imperfect art that makes use of science. Mistakes are bound to be made and a diagnostician ends up just doing the best he/she can. Really, that's all anyone can do.
I may be all wet, but unless there are significantly different experiences with each of the possible diagnosis or one has a cure and another doesn't, I can't see how much good it does to put yourself and your father through too many tests and diagnosis - not unless you hear that he has a nameable disease that can be cured with XYZ drug or ABC surgery. You know what you are seeing and a lot of what your dad is experiencing. And, with the research we've all done, you could probably make your own diagnosis if you had to. This is just me, but I think I'd ask the doctor how important it is to drill down to one disease on the list, and if there is any difference in the treatment of each and if any are curable. Based on the answer you get, compared to what you know, think about how many exams and tests you and your father can stand and whether it is worth it. If it were me, I think I'd say that I only wanted to go farther if there are different treatments for each or different chances of recovery.
Here's where your general practitioner comes in. Have him/her review the notes from this visit and the one in which the dementia was first diagnosed. Ask for their opinion and their most practical advice. And talk with the doc about you, what this is doing to you and what you want and need to know. After that, lay the ground rules for your dad's care, like under what circumstances can testing be done and informing you or getting your permission when meds are changed. As we've been looking at memory facilities or nursing homes, one of the ground rules that we have been adamant about is that the staff doctor is not to change a treatment or medication until he has cleared it with the doctor my mom has been seeing for the past 20 years.
Don't drive yourself crazy over this. Decide how much you want to do and where you want to stop. You're smart and you've done the research. When YOU are comfortable with the diagnosis and the treatment, that should be good enough. It's you and your family that are most important now - not the opinions of doctors who disagree.

Take care and trust yourself.

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]


Thu Jul 29, 2010 11:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another big decline
You're so right, Kate! Medicine is more art than science. Or, at least, it should be. Sadly, the art of medicine has been replaced by technology, which, while useful, can only yield answers to questions it understands. If that makes sense.

_________________
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 Jul 29, 2010 11:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Another big decline
Pat and Kate - you two have said it all, and so eloquently!
Here's where we are with my dad now - he is on hospice, and they have taken him off any meds that could prolong his "life" such as it is. They will only administer meds to keep him as comfortable as possible. We are not looking for a diagnosis anymore. I am curious and love researching, so I continue to do that unless it is making me more anxious or depressed. When it does, I stop.
Somewhere a few months ago there was a discussion on this forum about regional cultural differences. That issue has been one of the biggest obstacles my sister and I have had to deal with. For the most part, the medical community where my dad is is still in "the doctor is God, don't question, don't give your opinions, wants, or needs. Powers of Attorney don't count, nor do Advanced Directives or DNR orders". There are a few drs. and nurses there whom I've dealt with who are not of that mindset, but for the most part we have had to nearly go to battle with some of these folks.
My dad's current primary care person is a CNP - they are the ONLY people in that area who do "house calls" to ALFs and NHs. There is no staff dr., only a "consulting dr." We have no choice because he cannot be moved easily, the ALF only drives people to appts. on Thurs. and he can't be transported in a car anymore. He has to be seen in his room unless he is taken by ambulance to the hospital. So, there have been a lot of issues this month with his CNP and when we try to contact them you only get a "please leave a message for X by pushing Y." They do not answer emails, phone calls, or letters. His CNP was changed to a new person in the practice a couple of months ago. She is very young, inexperienced, and does not support AT ALL the idea of Slow Medicine for end of life patients, like my dad. We have requested by letter to the CNP director of that practice that she NOT be his CNP anymore, that someone else be our dad's primary. We will be shocked if we actually get a response from the CNP director of this practice. She has never returned a phone call nor an email message in the year she has been my dad's primary.
Luckily, the good thing is that Hospice seems good about working with the family, helping us help my dad do what HE wanted when he was of sound mind. The Hospice has a dr. who is supposed to be an excellent palliative care dr., and she is also the medical director of the hospital. After much angst about getting my dad off some of his meds, she just made the decision yesterday to support what he and the family have requested.
But, this hasn't been without a big toll on the family. I am doing everything I can do to take care of myself - exercising several days a week, painting, kayaking, spending a lot of time with friends, and now taking MY meds to help deal with all this. After talking with a few nurses and a director of an Alz. facility about what we have been experiencing with the CNPs in Maryland, they have all told me I should report what has transpired to the nursing board in MD. I don't know if I have the energy to deal with that at this point. I am exhausted from 3 months of fighting an uphill battle with the CNPs already, and we now have Hospice serving my dad and being helpful (so far!) I drive the 500 mi. back to MD in a few days to deal with more house issues and to be with my dad. Trying to get my energy up for this month's trip!
I don't know what I'd do without all the support from folks on this forum. Thank you. 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.


Fri Jul 30, 2010 7:39 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Another big decline
I'm glad your dad is in hospice. I haven't had the experience yet, but it seems that they are much better at helping with your dad's situation and helping YOU. If you can find one strong ally at the hospice, things could be a lot smoother. And it is very possible that the doctor at the hospice is better at dealing with your father's health as he is now. See if she has a private practice, though as a medical director at a hospital she's probably too busy for one. If your father shows improvement, enough to leave hospice for a while, ask this doctor if she is taking patients (if things go well with her) or for a recommendation to another appropriate physician. Even if your dad's been seeing the same doctor for 40 years, there's no law that says you have to stay with him. In terms that I don't think doctors like, you are the customer and if you don't like what you're getting, look elsewhere. I have a sister that drives 200 miles to see her physician because she's the only doctor that my sister likes and that has been able to help her. What would happen if you moved your dad to a hospice closer to you (if this one didn't work out). There's nothing saying that he has to stay within so many miles of his home. And your sister could do some driving to see him, for once. My mom and aunt moved my grandma 100 miles away from the farm so that it would be easier to take care of her. Grandma never realized she was so far from her home.
Here's what my little sis and I did to get in well with the staff at the TCU Mom was at after breaking her shoulders - we went out of our way to help and to treat them once in a while. We wanted Mom showered more often than was standard for them, so my sister did all of Mom's showers. We made a point of one of us being with Mom for dinner and got up to help a busy staff move chairs and serve coffee and tie bibs. And we brought in sweet rolls once in an while. And the staff came to love Mom and always asked her if her daughters were coming in. It's bribery, but it works!
Keep updating us. Tell us how your dad is doing, but tell us how you are doing to. Speaking for myself, it's you I'm worried about. What is going to happen with your dad is just going to happen. It would be nice if you came from this in one solid piece.
So keep taking care of yourself. And remember that the POA makes you the boss, as I assume the medical directive does. If the staff won't handle things the way you want, start looking elsewhere and dropping hints that you are looking for alternatives (not too obvious), but that you would like to keep your dad where he is - if they could just honor his and your wishes. Look for ways to make doing what you want in their best interest, too. It could turn them around.

You're doing a lot to take care of yourself. But is there ever a day when you are free of all responsibility for your dad? Two weeks ago, my sisters kicked me out of the house for a 4 day weekend. I didn't think I could leave worries about my mom behind, but to my surprise I had so much fun that I didn't worry at all (trusting my sisters helped). I had to lose it with my sisters to get them to realize I was in trouble, but when they caught on they came through with flying colors. Sometimes you have to give your very loving family a swift kick to get them to see you need help. But I'll bet yours will come through for you, too.

Do something special - something that you never do but would like to.

Best wishes.

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 30, 2010 11:36 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Another big decline
Thanks, Pat. We in the technology field have a saying: "garbage in, garbage out." Technology is only as good as its programming and the data given to it. Artificial intelligence is getting closer and closer, but I'd be hard put to trust it alone, without the intuition and judgement of a professional practitioner that I trust.

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 30, 2010 11:58 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Another big decline
If we do need a dr. I'd like to use this one who is the hospital and hospice director. The problem is getting my dad TO a dr. He needs someone to come to him, and that is a big issue in a small community. There just aren't any other choices in providers who do house calls. I don't know if she has a private practice or not - you're probably right, Kate, having those 2 jobs probably keeps her very busy.
As far as moving him to where I am, the cost is huge - about $12,000 for transportation. That will pay for a little over 2 months in asst'd living, and when he dies, it's really expensive to have a body transported 500 miles back to MD, which is what he wants. I also don't think he'd do well in an ambulance for 9 or 10 hours. He can't stand being in a car for more than about 15 min. I wish I'd moved him last year, but we didn't because he was adamant about staying in MD, so I have to do a lot of travelling.
I do things for the caregivers, too, like you. Sometimes it's a group present they can share, and I bring special gifts for those who are so wonderful with him. I've bought lunch for some of them when I go to Ruby Tues. to get my dad a crabcake. Showing your appreciation really does go a long way, doesn't it?
On the sibling subject, last week I really lost it with my sister over the phone. I had just heard from Hospice that he was accepted and they needed to meet with either my sister or me the next morning. Since it was already 2-ish in the afternoon, and I had just come back from MD, I couldn't be there with less than 24 hr. notice. So, I tried calling my sister on her land line and on her cell phone to see if she could get to the meeting. She rarely has her cell phone with her (which my dad and I got her and we pay for), or the battery is just about dead, or whatever. When she finally answered several hours later I just blew up. I told her I absolutely needed to be able to get in touch with her on a moment's notice. Surprise, surprise, she finally got it, and has been pretty helpful ever since. She actually is carrying her cell phone with her! And she calls to check in with me every day if she hasn't heard from me first. Wow. I guess you can teach an old dog new tricks. Wish I'd lost my temper with her a long time ago instead of trying to communicate respectfully!
No, there isn't a day where I can mentally get away from the responsibility of the house or my dad's care. I do at least turn my cell phone off when I am in my exercise class. But, the stress really gets to me. The heart issue I developed in Dec. is back again. I think I'm dealing with my stress in productive ways, but I guess I just surpress it and then I wake up with my heart in AF. At least it is going back to normal by itself right now and I haven't had to go to the ER again. But, I don't know how much longer I can take this. I feel like I'm working off some really bad karma or something. I shouldn't complain - there are many of you out there dealing with even more difficult situations with your LOs, and doing all the day to day caregiving yourselves. Thanks for all your support Kate, Pat & everyone. 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.


Sat Jul 31, 2010 2:21 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Another big decline
:shock: $12,000 for transport? My G..! I'm in the wrong business.
I'm learning, Lynn, that we need to take the time for ourselves 'cause it would take a miracle for someone to see our need and step up for the amount of time or help that we need. With your dad in hospice, now might be the only opportunity you get for some respite, and I'm suspecting that, without respite, you're going to need as much care as your dad does.

Funny how people will be careful to take care of their cars to get the most out of them, but they take their family for granted. What if you end up in the hospital one of these days? Someone else will have to take up your responsibilities then. Y'know, I've sometimes wished I would have a small accident or something - just enough to land me in the hospital for a week and force others to handle what I handle for a while.

It sounds to me like this is no longer just an "it would be so nice to take a couple of days" thing. It's more of a "the doctor says I need to get away from stress for a week and I'm going to follow his advice by (going on a kayak/camping trip with a group, taking a workshop in something you're interested in but have never done before, etc.) Do you have any goofy, impulsive friends who can talk you into skydiving for the first time at 55? That'll shoo other thoughts from your mind.

I'm finding that, unless you say I'm leaving for a few days and these are the dates, figure out how you will cover them, it is unlikely that someone will say I'm coming to cover for you for a week. Be ready to leave home for a while. Even if you have to hire PCAs for respite care (if your dad leaves hospice), do it. And pay for some of it out of your dad's accounts. You've earned it. Think what it would cost to hire someone to do what you do for your dad. You're entitled. And your family will muddle through - maybe not as well as you do - but you need to trust them to do their best. It might be different than your best, but it'll probably be good enough.

Now get out there and claim your time, contiguous time, for a thought consuming getaway. Or start planning for your hospital stay. Let the control freak who tells you that you have to everything yourself find out that you care enough to put yourself first once in a while.

Breathe.

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]


Tue Aug 03, 2010 11:50 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Another big decline
Kate, you say what I would like to say. With my LO, after trying and succeeding to some degree to provide all of the emotional and medical support that she needs there is a point when I tell myself that I have to take a break. It will never be perfect. This is a disease and it is progressive. We have one life and this is our time to live it. The way that I have gotten breaks is to ask for help. When the time comes that I need a break I ask for help from everyone. My sisters, my husband, my LO, the caregivers at the ALF, my LO's doctor, my husband. I've found that people step up. My sister and brother-in-law just flew across country to give my husband and I a five-day break.

Things may not go as I would wish or be done the way that I would have done them. But mentally and physically I am so much better after a break. And my family has a better understanding of our LO's behavior and living conditions, of the whole situation. To me, it is a matter of being honest with myself and others about needing help, letting go and accepting the help and the consequences.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Wed Aug 04, 2010 8:39 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Another big decline
Because I live 500 mi. from my dad, when I am home in my own house, it is more of a break than when I am in MD, where my dad's needy house and he are. He has been in ALF for a year now, so I am not daily taking direct care of him.
But, I do orchestrate his house care and repair as well as his care via phone and internet. For the last year I haven't turned off my cell phone much because I feel like I need to be on call 24/7. But I am starting to get smarter and turning it off most times when I kayak, am at the movies, having dinner out, etc. Now that the biggest job in his house is almost finished, I don't have to be on call for construction people who are rarely available when you need them, but call at 10 at night, or when I'm in the middle of teaching a class. By next week the biggest house issue will be done. That isn't something I could download to anyone else, although I have had a friend who lives near my dad's house who has recently helped me immensely, meeting with engineers and construction people when I can't be there. He is worth his weight in gold.
Since I got mad at my sister a couple of weeks ago she has stepped up and is doing a little more, thank goodness. Maybe when I get back from MD late next week, the current house project will be done and I will have met with his hospice nurses, I could just not answer the phone for a week! That would feel like a vacation, well kind of..... Maybe I'll just take myself to Maine for a few days since my husband says he's sick of travelling and doesn't want to go anywhere this summer.
Thanks for your support. 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.


Wed Aug 04, 2010 9:58 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Another big decline
I think a lot of us spend so much energy protecting our LO that we don't realize that it is OK to get mad at our siblings and let them know it. I've been shocked to find that, even when I rip them a good one, they come back after a few days of cooling off.

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]


Mon Aug 09, 2010 5:20 am
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