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 Sibling in Denial 
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Joined: Tue Dec 20, 2011 10:27 am
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Post Sibling in Denial
This is my first time on the message boards, and my apologies if this isn't the right area to post...the issue is less with me, and more with my sister. My dad was diagnosed with LBD about two months ago, after a whirlwind year where his health declined rapidly. He has symptoms of both Parkinson's and Alzheimer's, and has been in the hospital three times in the past month with UTI infections and colds. My sister is the primary caregiver, being the closest and the person with POA. I live 500 miles away, but we have a brother who lives about 60 miles from my sister and my dad.

My dad had been living in Assisted Living until yesterday, when it was determined he requires too much care for that facility and has to find another place to live...by tomorrow.

There are two issues I'd like help with: First, I have heard conflicting accounts on the need for LBD patients to be in Alzheimer's units. Does anyone have experience or input with that?

The second is more about the relationship with my brother, who doesn't believe my dad has LBD...he thinks it's the medication. He tells my father he thinks it's the medication, which in turn makes my dad doubt my sister, and become angry at her. My brother at first thought my sister wanted POA for monetary reasons (my dad is a retired schoolteacher and doesn't have a lot of money, so this really isn't logical). He has been fighting my sister for months, and today it came to a head when she called to tell him my dad has to find another place to live. My brother again mentioned medication, and how we can be sure my dad has LBD, and that he wants my dad to live closer to him, though we only have one day to find him a place. My sister explained (though with a lot of emotion and resentment) that Dad needs to have all his stuff out, and even though he is in a facility there is still a lot that she does for him, including bringing him supplies (he needs adult diapers) and medicine, and since my brother works he might not be the best person to do that.

Here is my question about this: does anyone have a suggestion about how to convince my brother that this is a serious illness requiring a lot of care? Or is this something we (my sister and I) should just let go of for now, given her POA? Really, my bigger concern is the effect he has on my dad's state of mind when he tells him things like 'it's just the medication' and 'I don't know about this diagnosis'.

Thanks for any insight,

Lara


Tue Dec 20, 2011 2:08 pm
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Location: SF Bay Area (Northern CA)
Post Re: Sibling in Denial
Tough situation. My two cents is for you and your sister to try to let go of the issues with your brother for now. If possible, ask him to arrange to go to the next appt with the neurologist (or psychiatrist), and give that MD a heads-up that your sister will raise the question of "could these symptoms be entirely caused by medication?"

I think anyone with dementia should be in a dementia care facility.


Tue Dec 20, 2011 2:53 pm
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Location: Vermont
Post Re: Sibling in Denial
Obviously finding a suitable place for your dad and getting him moved is of the utmost importance. Robin makes a very good point of suggesting that your bro. go to the next couple of dr. appts. so he can hear it from them.
My sister quite often brought up subjects or said things in ways that greatly upset my dad, and it wasn't even some thing as emotionally charged as his diagnosis. I constantly had to remind her to think before she spoke in front of him or to him, so that she didn't get him more aggitated than he already was. Some people are just clueless about social cues, what's appropriate (and not) to say. Eventually she got banned from the ALF for a while because so many CGs complained about things she'd said that got him upset.
Hopefully it won't come to that with your brother, but that is what happened in our situation and I was the one who got to break the news to my sister that she couldn't visit with my dad. This was a day or two before she was going to take a birthday cake to the ALF for him. Geez, that was not a fun thing for me to have to deal with over the phone! My thoughts are with you, 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 Dec 20, 2011 4:25 pm
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Joined: Mon Dec 12, 2011 3:46 pm
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Post Re: Sibling in Denial
Hi Lara,

Am pretty new at this also - joined December 12th.

My heart felt tugged at when I read your story. In a similar boat to you right now - though of course everyone's experience always has their own twists and turns and challenges. My Dad was diagnosed with rapid onset LBD (primary) 1.5 years ago. 1 year ago he was living at home, driving, socializing and engaged in life. Today, he is in the sub acute wing at a hospital - there 2 weeks so far - and we have been told at least 2 weeks more. (Until he is placed.)

Will give you a few things I learned (too late in some cases, on time in other cases):

Not sure what stage your Dad is at so not sure if the following is of benefit at all, but judging by the conversation your Dad is still able to hold with your brother then this may help:


a) I would advise anyone to really carefully discern whether or not the Alzheimers is primary or secondary or tertiary. Eg. Does he have LBD with "Parkinsonism" ; or Parkinsons with "Lewy Bodism" or "Alzheimers with Parkinsonism and Lewy Bodyism?" Et cetera. Simply, which word is the adjective and which word is the noun? This may seem like mere semantics or trivial - but the primary dx makes all the difference in the world in terms of the type of care and treatments you seek for him, and the decisions you will have to make now and down the road...

b) In my Dad's case, it was an incorrect decision to place him in a full-on dementia and Alzheimers unit... he should have gone to respite in a "mixed" unit. I firmly believe placing an LBD'er (primary dx, that is not secondary to other diseases) is not the best alternative. But it is frustrating because LBD'ers can difficult to place. We are going through this with my Dad... he went to 30 days respite on an Alzheimers and Parksinsons unit...we had believed he was going to be introduced to the level just above assisted living - but this was not the case. He ended up staying 6 out of the 30 days - they sent him to the hospital because of an "episode". We were told by the doctors and the paramedics that it was a "socialization" and "environmental" problem. His blood sugar ended up being low - and we actually think this, along with no one socializing with him, contributed to his episode. The care workers were darling - but they understand full on Alzheimers or full on Parkinsons or Vascular or Old Age dementia, et cetera. They are unfamiliar with the dramatic swings of LBD'ers. To give you an idea: one care facility thought he was suitable for Assisted Living and one care facility wanted him to be in a unit with wheel chair bound patients who were unable to speak or engage with him... Dad needed something in between.

c) I would strongly urge you to find a facility that has several levels of dementia care - starting with just one level above assisted living. And we are now looking for this for my Dad...our intention is to hire extra help (aside from my Mum and I) to give him extra showers and take him outside for a walk and assist the physical therapist. This is all to make Dad comfortable - it will not stop the disease from taking its toll but comfort and quality of care is what we are seeking right now. If your Dad still recognizes people, and still engages and enjoys company - then perhaps consider hiring a companion (if between friends and family there are simply not enough volunteer hours in the week) who just simply goes in and talks to him, or reads or does puzzles with him or walks him et cetera. LBD'ers go very short of socialization when they are lumped in with other dementias... and it actually even causes episodes for them...If money is an issue, try even just hiring a companion for two 2 hour sessions a week - and maybe family and friends can take turns going in...

Have learned with Dad that "social" is his 3rd name... and that 'attention' actually prevents episodes and further drugging

d) Re your brother - well, in kind of an interesting way, he is partially correct - and you are correct also. So perhaps you and your siblings are all correct... perhaps your Dad is on drugs that harm is "baseline" - I certainly noticed this with my Dad but while he is in the hospital we have no choice. And your bro needs to understand your Dad has a degenerative disease. Many drugs used for Alzheimers and Parkinsons are contraindicated for LBD'ers - but the docs prescribe them anyway. They seem to be hung up on the hallucinations... we have come realize, at least with my Dad, that who cares if he thinks there is a little girl in the room visiting him? Anything scary, we just tell him that we "kicked it out of the hospital" or "threw it away because it was ugly" or whatever... he is always totally satisfied with this. A little ingenuity and creativity goes a long way... I have learned to be imaginative again and immerse myself in my Dad's nonsensical conversations (though I always talk sense as though he can completely understand me - in case he is lucid but just cannot communicate it. And he and I communicate just fine right now.

e) Re your Dad, himself.

i) Telling him about his disease or "realty". My Dad was always a very firm realist. However, we are being gentle with him. No need to have a sit down and throw it all out there on the table at once. LBD'ers are fearful and suffer dreadful anxiety even when they hear no negatives. What I said to my Dad was "...you know Dad, how you have this type of disease where your body does not always work properly... well we are taking you to the hospital and they are going to run some tests". And then re the care home, I told him that Mum was no longer able to look after him - not because she did not WANT to, but that the doctors told her she was unable to... you and your brothers could tell you Dad something like this?! My Dad was somewhat worried when I told him - but he actually looked at me and said "I understand ... perhaps it is a good idea that several people check me out...". This 'story' has made the transition between care facilities, emergency and the various hospital wards way easier... and they have all remarked at how well my Dad has settled down and adjusted... it is because I told him what he needed to know - but have not hammered reality into him...

ii) Care: If your Dad is ambulatory and enjoys people and visiting... then ensure that he has access to this. A unit where everyone is howling and screaming "scares" LBD'ers - they suffer tremendous anxiety. My Dad actually used to go in and talk to the nurses because he felt they were, in his words, "normal". LBD'ers recognize normalcy though they may not be able to 'be it' or 'exhibit it' all the time or even most times... they need the comfort of normal people being around? It really is 'therapy' for them. Usually, medical systems seem to think like enjoy being with like - in the case of many other diseases it works. But LBD'ers crave normal people and normal conversations and not be talked down to or talked to like 2 years olds... Does this make sense? Have found that treating my Dad like the businessman he was really helps him with his functioning level...

Additionally, please ensure he is going to be fed well - and if he cannot eat or drink - then someone will spend the time with him. A few of us are experiencing a problem with this - and hunger and thirst can send LBD'ers over the edge. Of course, it can send any of us over the edge... but for some reason it really seems to affect the chemical reactions in their brains... We were advised by the nurses that we should feed my Dad at least once a day if not twice a day in order for him "to get enough food and drink". We were a little shocked but we have been feeding my Dad twice a day for the last 2 weeks...

Perhaps I am rambling - but want to relay my experiences on - hoping that it might give you and your family a little info which may help even if just a little bit...


Tue Dec 20, 2011 7:43 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Sibling in Denial
Lara, can they really do that? I mean I'm sure an ALF can determine that they cannot provide the care a resident needs, but one day's notice? That sounds like it shouldn't even be legal. I wonder if talking to an ombudsman would be a good step at this point.

I only have experience with a limited-time placement for rehab after a hospitalization. It was in a "memory care" unit and I'm not at all sure that was the best choice. I definitely would not have left him in a dementia unit if I couldn't have brought him home then.

And though that facility called it their "memory care" unit, it was clearly an Alzheimer care unit. There was no recognition there at all that all dementias are not created alike. That place is very conveniently located for us, but I've crossed it off my list of possibilities if Coy needs placement.

A woman I knew was in an ALF when she was diagnosed with LBD. That facility had never heard of it and had never had someone with it. But they were very willing to learn and she had two relatives who also were very willing and able, who did lots of research and provided materials to the ALF. (If you can't find a place with LBD experience, hope for one that is open and willing to learn.) They kept her in the ALF section for quite a long time, and eventually transitioned her to their memory care unit.

In my local caregivers' group, there is a mixture of using memory care units and not. I think it depends on the skills and behaviors of the individual as well as the strengths and attitudes of the facility.

No matter where your loved one winds up, it will take a lot of advocating and a lot of hands-on family participation for him to get the optimal care.

Other family members being in denial is pretty common. There may be ways you can encourage a better understanding on their part, but I'd say you have enough on your plate right now looking out for Dad. Deal with brother later. And at least your sister has you on her side.

Welcome to our forums.

_________________
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 Dec 20, 2011 10:19 pm
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Joined: Tue Dec 20, 2011 10:27 am
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Post Re: Sibling in Denial
This is all very helpful--thank you for it. I agree that my brother should go to a doctor's appointment and hear the diagnoss for himself, and suggested it to my sister He has a habit of skipping out on them at the last moment.

To edunbar: this all sounds very very familiar. One year ago, my dad was involved with town politics and took frequent drives and weekend trips. Now we have to take his phone away from him because he repeatedly calls the local police, convinced he is locked in a Wal-Mart with no escape. He's had some days where he's so bad he can't handle feeding himself.

The doctors have told us my dad has a very unusual case because he exhibits equal signs of Parkinson's and dementia, without one being more prominent than the other.

It's really good to have all of this information on different experiences with different facilities. My sister is overwhelmed and feels alone without the support of my brother, because he's the sibling who can physically help her. At least knowing this stuff can help me support her and help all of us make a better decision about care.

I just can't believe how quickly this disease has taken over my once independent father, and what it's done to our family.

Anyway, thank you all very much for this. I really appreciate it.


Wed Dec 21, 2011 12:19 am
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Joined: Mon Dec 12, 2011 3:46 pm
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Post Re: Sibling in Denial
Hi Lara,

Re equal levels of Parkinsons and Dementia - with such a rapid onset - please check into a dx of "LBD Primary with Parkinsonism".

And I agree with you that they sound very similar... my Dad was "typed" as an 'interesting case' interestingly - because of the fast onset of dementia with Parkinsonism... Dad was working full time up until 1.5 years ago - a 50 hour week at age 75...parents took road trips, had a dog, gardened, played tennis, et cetera. And we arrived home one day to find 3 squad cars in the driveway because my Dad saw 7 kids running out of the house...his phone was taken way gradually.

Luckily Dad had a GP who clued in right away. He told that he had Parkinsonism...but that he had another primary disease. Subsequently, Dad was told by GP, neuropsychiatrist and neurologist that it was Lewy Body... the fast onset coupled with hallucinations is what seems to draw out LBD as a primary diagnosis.

Parkinsonism can go along with LBD to be sure - but often the docs only 'see the Parkinsons' because the patient and/or family either do not mention the hallucinations when they first start (or they cannot recall); or the hallucinations are not witnessed until after they have been going on for a long while when other symptoms or diseases begin to manifest and/or appear; or patients/family think it is just part of dementia in general and so don't think to mention it to the doctor in particular...

Fast onset of hallucinations for my Dad (and because my Dad still worked we were really able to discern it ), and his paranoia and his "Mall" experiences meant he was virtually a textbook case re LBD. His Parkinsonism was not his primary disease. Someone might look at my Dad and think he is equally affected by the two - but he is not - he is LBD first for sure.

As mentioned in my prior posting, this makes a huge difference re his chosen care...and when to place him and whether someone will take thim or not... The implications can be very dramatic and actually cause irreparable harm to your LO. For instance, many drugs used for other kinds of dementias are not for LBD'ers - and medical personnel need to be informed quite often.

Eg. Re my Dad: we gave the respite place his drugs - and they asked about a couple of anti-psychotics and we told him that he was taken off a couple because he was worse off and way lower functioning when taking them... Care center started giving him Tylenol 3 doses. Am positive, though can never prove it, that these pills coupled with the low blood sugar and lack of social and environmental stimulation brought on his incident sending him to the hospital - from which I do not believe he will ever recover to his original baseline. All drugs need to be given to LBD'ers very carefully - even just cold medications, et cetera. Tylenol 3 can cause, besides other things: mood changes; nervousness; restlessness; trouble sleeping; confusion; hallucinations. Now, why on earth (even though am not a doctor), would the care hospital give a Primary LBD'er 3 doses of Tylenol 3 a day just reading the above possible side effects? Particularly when LBD'ers have a tendency to experience these symptoms without the drug - why give a drug to them that could just magnify the problem?!

Really wanted to give this experience of what can go awry: Dad was placed on a Alzheimer's and Parkinson's unit...considered as having dementia like other dementias...not socialized to the extent that he needed nor did he receive any occupational therapies. His dementia was "boot strapped" despite my virtually begging for him to not be treated like other dementias...and we were even prepared to pay for additional care and/or stimulation because we knew how important it was. However, my words, in some cases, fell on deaf ears. Much advocating by family and/or friends and/or service/care providers or outreach is needed in order to assist our LO's with LBD...

Fearful that I do sound like I am droning on... but a correct dx is part of the battle. Please check into "Primary LBD with Parkinsonism" or "Primary LBD with Parkinsons". Many caregivers have their problems multiplied exponentially (unwittingly) because of wide spread under-diagnosis and/or non-diagnosis of Primary LBD...as demonstrated above re my Dad.

And hoping that if I am, indeed, perhaps only one or two steps ahead of you - then my passing on my challenges as they occur might help you and/or your siblings...


Wed Dec 21, 2011 4:08 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Sibling in Denial
Lara,

You might get some ideas from the book "They’re Your Parents, Too!: How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy." The book, a related Wall Street Journal article, and a good 11-minute audio interview with the book's author are described in this post from earlier in 2011:

viewtopic.php?f=13&t=2782

Robin


Wed Dec 21, 2011 2:52 pm
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Location: SF Bay Area (Northern CA)
Post Re: Sibling in Denial
And, there is a related website with info you, your sister, and maybe your brother might find useful:

http://www.yourparentstoo.com/


Wed Dec 21, 2011 2:54 pm
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Joined: Tue Dec 20, 2011 10:27 am
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Post Re: Sibling in Denial
Thank you all for this.

We have a new crisis today that perhaps some of you have experienced as well, and can provide insight into. My dad, who has been in the hospital for the past four days, has a malfunctioning kidney, but because Medicaid refuses to pay for the treatment, the hospital wants to discharge him today. He was evicted from Assisted Living, as mentioned, and as some of you have said I don't think it's legal so much as pressure from the facility ("you are eligible for a refund on the rest of the month if you leave within the next two days", etc.)

We had a bed lined up for him in a local facility, but because he has a catheter they are now telling us they can't accept him. He needs a rehab facility or a nursing home.

Does this sound kosher to you in your experience? Also, can anyone point me to resources on how to fight Medicaid in this type of situation?


Wed Dec 21, 2011 6:48 pm
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Location: SF Bay Area (Northern CA)
Post Re: Sibling in Denial
Lara,

I'm sorry but I don't know anything about challenging Medicaid. Is there someone at the hospital (social worker, discharge planner) who can advise you on this?

As for the ALF (assisted living facility) telling you that your father must leave, in my mind this is completely WITHIN the rules.

I don't know about the facility that is saying they can't handle a catheter. Is this a Foley catheter (for urine catchment)? I'm not aware of any states having a rule that their ALFs can't take those with catheters. Is it a small board and care home that might be governed under different rules?

Frankly, I do think your father is appropriate for the dementia wing in a SNF (skilled nursing facility). There's a lot medically going on with him, and I think it's inappropriate he be in an ALF.

Contact your state or county long-term care ombuds person for assistance in explaining the rules to you, and in offering some guidance as to facilities. The hospital should also be able to provide similar assistance (check with the case management/social work department or the discharge planner assigned to your father's case).

Good luck,
Robin


Wed Dec 21, 2011 7:23 pm
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Post Re: Sibling in Denial
Lara, just a couple of things. I've tried to follow the sequence as best I could. Yes, a care facility can discharge a resident to the hospital and refuse to readmit them because, technically, they are not evicting him as he is now in the hospital [This very thing happened to my husband]. As far as I know, the hospital cannot discharge him unless placement is found. Be sure to speak to the discharge planner about this and make sure the admitting physician knows that taking him home is not an option.

Quote:
The doctors have told us my dad has a very unusual case because he exhibits equal signs of Parkinson's and dementia, without one being more prominent than the other.
This sounds like typical Lewy to me and has been pretty much my husband's situation from the onset.

Wishing you well! There is nothing easy or straightforward about any of this and I'm so sorry you're facing so many obstacles. 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.


Wed Dec 21, 2011 9:11 pm
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