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 New member and it's complicated (isn't it always) 
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Joined: Thu Jul 22, 2010 1:58 pm
Posts: 12
Post New member and it's complicated (isn't it always)
Hi--my dad has suffered from a syndrome that includes LBD as well as post-polio syndrome. He has been functioning at about 20% cognitively and recently stopped walking and sitting altogether. A swallowing study a couple of months ago indicated he was inhaling food and water and Drs suggested a feeding tube, which my mom didn't really decide upon.

Last week he was admitted with 104-degree temp and pneumonia from inhaling saliva. He apparently was covered with bedsores and Drs. gave him 5 antibiotics to bring the fever down and also installed a tube into his stomach...my mom claims that the tube will build him back up and all of his faculties may return.

Other than the fact that I'm pretty sure he wouldn't want this, I am concerned because my mom is a very difficult and paranoid person and refuses to allow him to go to a temp nursing facility, which Drs. suggest, or to let help come to the home. She has been handling his care around the clock with no backup for 3 years and recently told me she sometimes locks him in the car whe she has to buy groceries. If she breaks down, there is no one else. She is so incredibly toxic that it is very hard to spend time with her and help out.

Finally, to complicate matters, my little brother is in final stage liver failure and waiting for a transplant, and he tends to get very wrapped up in trying to help dad...during the crisis of last week, his own symptoms worsened dramatically from the stress, as I was out of the country and my mom called him to come help her load dad in the car and drive him 45 minutes to the hospital where my dad is covered. I am afraid this will kill my little bro, kill my mom from the exhaustion, and...I know my dad is dying, but I'm worried he is going to end up at home without adequate care in his last days.

Sorry so long...any elder care, legal, or supportive suggestions? Thanks!


Fri Jul 23, 2010 9:43 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New member and it's complicated (isn't it always)
Welcome to this forum. Glad you came here for information and support. It's a difficult road, as you are finding out.

First of all, your mother: If she has been taking care of your dad without help 24/7 for three years she is probably a basket case by now and needs help. You say she is 'toxic'. I'm not sure what you mean. I can almost guarantee that she is suffering from sleep deprivation and physical and emotional exhaustion, which can cause all kinds of mental and emotional problems.

Second: Did you father sign an Advanced Directive? Health care power of attorney document? If your mother is deemed temporarily incapable of making decisions on his behalf, there should be a secondary person named on the POA document who could take over. It does seem sensible that he go to a care facility before going home. Is Hospice an option?

Sorry to ask so many questions but how you proceed depends a lot on the groundwork that was laid. God bless you in your care for your father and I will pray things go well for all of you. And, again, welcome!!!

_________________
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.


Fri Jul 23, 2010 10:25 am
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Joined: Thu Jul 22, 2010 1:58 pm
Posts: 12
Post Re: New member and it's complicated (isn't it always)
Thanks so much for the quick reply. My mom was long sick, even when I was a child...mainly paranoia and distrust of strangers and even her own kids. She threatened to not attend my wedding until 3 days before and has not seen my son, who is 7, in five years because he gets a lot of attention from the in-laws. It is a well-known fact among family that she is ill, which has only concerned me greater since Dad "checked out" in a rage 2 years ago and my brother arrived at the house to find that she had taped black garbage bags over the windows to keep him from trying to get out of the house, and he had become delusional and violent. After a prostate surgery and general anesthesia, he became sicker and hospice came in for a bit, but then he recovered so they pulled out.

I have asked mom for info about any advance directives or living will he may have had but she will not talk about it, nor will she share any info on their will, financial status, attorney and so forth. When Dad got sick I started getting calls from creditors because they lost control of their debts (Medicare black hole) and she has not communicated with them or tried to resolve the debts. She did get a reverse mortgage on the house so that is sustaining them financially, but if (when) she crashes it's all an unknown...she has no central place for papers and to top it off, she's a hoarder.

All this said, she is my mom, and I do care a great deal about her and dad but know it's just a very delicate situation. We are on good terms, but there are things I just don't bring up because it upsets here. So I just don't feel like I have any control but can only wait to clean things up after the outcome. She just isn't willing to share any information, and I don't know how she has managed as long as she can...emotionally and physically, one can only hang on for so long.

Sorry again for my long post...thanks


Fri Jul 23, 2010 11:09 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: New member and it's complicated (isn't it always)
Hi and welcome. You do have a difficult situation and I'd highly recommend you go to the nearest social services office and report what is going on immediately. The fact that your dad is covered in bed sores alone is cause for great concern that he is not getting adequate care. You should document everything that is happening that is not in his best interest, report it to social services, his doctor and probably get an attorney yourself. Sounds like someone needs to take over for your mom because she doesn't sound capable at this point of taking care of anyone, including maybe herself let alone your dad. According to what you've said, you will probably have to fight for POA so you can better take care of him (and her and your brother too?).
Is your brother an adult? Does he have support from his own family that could help you with all this?
Don't worry about long postings. That's what this forum is here for - to listen to all you have to say! 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.


Fri Jul 23, 2010 11:57 am
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Joined: Thu Jul 22, 2010 1:58 pm
Posts: 12
Post Re: New member and it's complicated (isn't it always)
Thanks for the reply! Yes, I have thought about contacting the social worker at the hospital to let them know that mom is planning to tell them she'll only agree to home care and then will 86 that. She said she has been "watching the nurses" use the feeding tube and is sure she can handle it. I've no doubt that my dad doesn't have long, but I don't want him to end up with a painful infection as a result of the tube. This will sound awful, but she said that she's hoping he can hang in long enough for his life insurance to fully fund so she can pay for burial expenses.

My brother is married but his spouse stays completely away from my parents. I am concerned that he is not able to "let go" of the worrying and involvement, and will progress much more quickly. When mom spoke of bringing Dad home and refusing help he got very angry with her because he knows that the toll will be on us if/when she collapses and there is absolutely no backup...they live in the country and she doesn't even have a med-alert button...and she physically gets Dad in and out of the shower on her own. Thanks


Fri Jul 23, 2010 12:18 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New member and it's complicated (isn't it always)
Believe it or not, I have heard of other people taping black plastic over the windows because their LBD spouse was seeing 'people' coming through the windows.

It sounds like your family dynamics are not the best which just makes this whole hideous Lewy situation even worse. I agree with Lynn that a social worker [preferably MSW] might be able to sort this out for you. If not, you might try your county mental health crisis clinic. I wish you well!

_________________
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.


Fri Jul 23, 2010 12:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New member and it's complicated (isn't it always)
PS: After reading you last post, re: the feeding tube. Chance of infection is very remote. Please make sure the doctor orders home health services [I'm assuming they are on Medicare?] and they will come out for a few days or weeks to teach the tube feeding, check the insertion site and assess his [and her!] condition and comfort. This is very important!

_________________
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.


Fri Jul 23, 2010 12:22 pm
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Joined: Thu Jul 22, 2010 1:58 pm
Posts: 12
Post Re: New member and it's complicated (isn't it always)
Thanks so much, folks! I know this all sounds a bit unreal but I bet there are many families as jumbled up as mine. I do know now that I need to speak with someone outside the family who can be aware of the care situation and make sure that Dad receives the care that he needs. That will be the first step, and then I suppose I will start considering the longer-term issues at hand. I figured I could ignore it all and it would stay away, but it's obviously time to be more involved, albeit behind the scenes.

Again, thanks so much.


Fri Jul 23, 2010 12:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New member and it's complicated (isn't it always)
Just to clarify the home health care system: They make intermittent visits, they don't stay with the patient. I'm sure he would be eligible for a home health aide to bathe him three times a week as well as the nurse to teach and assess. If he has multiple pressure ulcers, a nurse might be able to come out to dress and assess those for a longer time. Hope your mother will allow it. Sounds like she might not. If not, some legal action might be necessary. I'd be interested to know what your father's doctor has to say about this, if anything. [PS: I'm a home health RN but have not worked since 2005--just taking care of my 'number one' patient now.]

_________________
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.


Fri Jul 23, 2010 12:46 pm
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Joined: Thu Jul 22, 2010 1:58 pm
Posts: 12
Post Re: New member and it's complicated (isn't it always)
Thanks again mockturtle--will let you know how it progresses with the M.D. if I can. Mom claims that their physician of 20 years "dumped" them a couple of months ago...he was executive health and referred dad to a geriatric specialist, which P***ed mom off enough that she just goes around the hospital publicly badmouthing him (I think he couldn't handle her anymore). Now they are just being passed off from doc to doc with no central oversight from one person, with damage control being the main concern. Think it's a situation where there's no ownership and nobody wants that involvement and/or to worry about legal action... she is just that agitated... and it's such a shame, because she has suffered so much for it. cheers


Fri Jul 23, 2010 3:13 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New member and it's complicated (isn't it always)
There are a lot of physicians who don't want to deal with dementia patients and their spouses [and, being a spouse myself, I can fully understand that! :lol: ] In my experience, geriatric specialist is the best choice for a primary care provider if you can find one who is willing. Too bad your mother doesn't see it but she probably needs care, herself. Sorry you are having to deal with so much turmoil. I'm sure you'll be hearing from a lot of the other members before long with more support and advice. God bless! --Pat

_________________
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.


Fri Jul 23, 2010 3:56 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: New member and it's complicated (isn't it always)
When you DO get some help from outside the family, it's a good idea to share it here, as there is bound to be somebody else on the forum who can learn from your experience. Sharing info. here is so helpful!
I hope your brother gets the help he needs in a timely way, too. What an awful thing he is dealing with re: his own health.
Do you have a good attorney? 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.


Fri Jul 23, 2010 4:35 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: New member and it's complicated (isn't it always)
lahunt, Pat and Lynn have given lots of suggestions and advise, I agree with them and wish I had some help to pass on. I will keep you in my thoughts and prayers. I'm a caregiver for my husband and have been thinking about my girls. What would they do if Frank and I were in the same situation as your parents. I'm sure they would do whatever they had too, to make sure both of us were safe and got the necessary care to keep us that way. My heart goes out to your mom I think she feels she's keeping their vows, "for better or for worse, in sickness and in health". It does sound like your mom has lost focus on reality. Take care or yourself and good luck.
Gerry

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


Fri Jul 23, 2010 5:36 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New member and it's complicated (isn't it always)
Can you talk to the social worker at the hospital about this situation? Hopefully this person can help you and the MD figure out the situation. A couple of options would be to discharge your father to an in-patient hospice facility, or discharge your father to a SNF.

Are you willing to file a complaint with the local office of adult protective services? That's what it's called in California, and it's organized by county.


Fri Jul 23, 2010 5:48 pm
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Joined: Thu Jul 22, 2010 1:58 pm
Posts: 12
Post Re: New member and it's complicated (isn't it always)
Thanks so much for all your prayers and suggestions. I am so glad I waited for the board bug to be fixed and went ahead and posted. Today I learned that I am not powerless. I might add I have another brother who has declared Chapter 11 twice and had mom and dad move in last year to pay his rent...and was making trips back and forth to their house and selling their cars and furniture for pennies on Ebay :-) without their knowledge, and kept the $$ so he is of course another factor to be cognizant of re mom's situation post-dad. My husband is an attorney, although not family law, and I think I probably do need to talk with an attorney, and definitely with the social worker at the hospital.

Even since Dad got sick, my philosophy was to stay out of it...but at this time, it seems like I have somewhat of an obligation to see things work out the way they should. It's none of my business, but unfortunately, it is.

You guys are awesome to share with the struggles I know you also must endure. Hugs to you, and I'll keep you posted...


Fri Jul 23, 2010 5:57 pm
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