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 second guessing 
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Joined: Sun Jan 24, 2010 3:27 pm
Posts: 26
Location: Illinois
Post second guessing
Hi, about a month ago we had to remove my mom from her home which she resided with my father. They have been married for 53 years. He had hit his boiling point as he put it with her accusations about his unfaithfulness. It got to the point were her could not walk in the room with out a argument happening. I guess the point of no return was when my mother called 911 and said that my father and his mistress were out to kill her and the cops came barging in guns drawn and told my father to get on the ground. He proceeded to have them call a ambulance to take mom to the hospital and were they treated her for a UTI and was going to send her home. Yet dad said she isn't coming home with me, so I took her home with me for a few days until we could find a place were she could stay. A retirement home just down the street which is a great place mind you but a pricey one at that. She has been there for two months now. I told dad that I think it would be best to have mom come live with me. My husband and I could care for her and make sure that she is taking her meds and gets to her doctors appointments on time. I know what that taking care of mom is not going to be easy and I guess I just need some one to tell me that I am doing the right thing.

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lots of love and prayers
Lynda


Fri Aug 13, 2010 9:41 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: second guessing
You could try it but it might not work out. It could endanger your health and your marriage and make your father feel like a failure, as well. Many of us who have been dealing with this disease for a number of years know just how demanding--sometimes, downright impossible--this caregiving role can be. Your intentions are admirable, but please give it a lot of thought before such a commitment, OK?

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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.


Sat Aug 14, 2010 12:47 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: second guessing
If you like the place where your mother is and feel she's getting decent care, I would suggest leaving her there and visiting often. Perhaps you can speak with your father about becoming your mother's healthcare power-of-attorney, and taking responsibility for her care management. Sounds like that's one area that could be improved considerably and you could make a big impact.


Sat Aug 14, 2010 1:13 am
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Joined: Sun Jan 24, 2010 3:27 pm
Posts: 26
Location: Illinois
Post Re: second guessing
Thanks guys for the support. Unfortunately we have a lot to consider before taking this step and Robin... yes I do like were mom is and I know she has 24 hour care yet the price of the home it is going to suck my father dry. My father is not in the greatest of health. He found out recently that his Cancer is back and we are unaware on what the future holds for him as well. He hates the fact that she is in that place and he said that he would like to see mom at our house knowing that she is surrounded by family that loves her and is willing to do the best for her. She says that she is a prisoner in a place that is full of strangers yet when I ask her to come stay with us she says no she will find a place of her own, which she is not capable of doing. I just want to do the best for her. Mockturtle... I know the strain it can and will cause and my husband and I have talked about this many times over and he says that when we got married it was for better or worse..lets just hope that sticks :P

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lots of love and prayers
Lynda


Sat Aug 14, 2010 9:13 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: second guessing
I think we, the caregivers on this forum, know what you might be getting into, I think if it were my mother I would do as you are planning. There is no way to understand how this will change your life until you live it. If your mom doesn't want to live with you are you prepared to follow her like a shadow, she may wander. I take care of my husband and I don't have time for much else. I hope it all works out, if it doesn't at least you'll know you had her best interest at heart.

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


Sat Aug 14, 2010 9:29 am
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: second guessing
I totally understand where you are coming from. When my Dad was diagnosed last year I rolled up my shirtsleeves (so to speak), rennovated the house to accomodate him, sat the kids down and told them Grampa was moving in so i could look after him. 10 months later he is in a LTC facility because the disease progressed at a rate we hadn't counted on. Going into it I knew very little about LBD and relied on the dr.'s to inform me which was my big mistake. It took every minute of every day to care for him and I had no time for my kids, my friends, or myself. I love my Dad dearly but my children had to come first and hence the decision to move him. I hope he knows that I did my best as long as I could. You have to do what your heart tells you to but be prepared for the reality as much as you can.

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Sat Aug 14, 2010 9:54 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: second guessing
bbunchx6 -
What was your original thinking when you placed your mother in the care home?
Robin


Sat Aug 14, 2010 11:22 am
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Joined: Sun Jan 24, 2010 3:27 pm
Posts: 26
Location: Illinois
Post Re: second guessing
Robin

My first reaction is that we need to find a place that she is safe. She has auditory delusions and the voices that she hears are alot of different people telling her false things and she acts out by yelling at dad for things she hears. She had said for months that she wanted out of that enviorment and away from dad and his "girls". She had said that she wanted her own apartment, so I ran with that idea. I told her I found her her own apartment and she couldn't wait to move in. She thought that if she left the house that the voices would stay behind. She calls them "spirts". Major denial with the whole thing. I'm fully aware that the voices are going to follow her here if that is what we decide to do. Also fully aware that I or my husband could be the next victim in her delusions. The difference is that I or my husband can make sure she is taking the correct medication and try to help her in that manor. Right now I put moms meds in her food every night, The place were she resides doesn't monitore her medication. Because of the fact that their rules are that they have to tell her what they are giving her and she refuses to take the sequel because she doesn't have a disease.
I must follow my heart, yet I sike myself up to have her move in and then I question myself if it is the right thing for all of us.

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lots of love and prayers
Lynda


Sat Aug 14, 2010 11:56 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: second guessing
I think the question is, should you face "suck it dry now?" or "suck it dry later?" because your mother is likely to live for years. You should probably see an attorney in regards to preservation of assets.


Sat Aug 14, 2010 12:58 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: second guessing
It's an interesting question: does your mother's dementia make her incapable of denial?

I think we've all been in a situation where you'd like to let the person with a dementing illness make as many decisions as possible, but at some point that can conflict with everyone's safety.


Sat Aug 14, 2010 1:47 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: second guessing
Oh Lynda, you have been through a tough time and now have more decisions to make. I'm so sorry. With your own kids and your job, how in the world are you going to take care of your mom too? It sounds like she needs a lot of care. And your poor dad. Does he have someone coming in to help him? 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 Aug 14, 2010 2:51 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: second guessing
Lynda,
nandel8 gave you some good advice when she said you should see an attorney about preserving assets, especially with the needs your dad will have. Also speak with a social worker (private or public) to find out about financial assistance in case the well runs dry. This could make a big difference in care options as both of your parents age. Finances have to get pretty low before medicaid kicks in, but it is something you want to keep in the back of your mind when you are looking at the options.
I'm having similar worries about my mom. I know that, within the year, I will have to make a decision about a SNF or home. My mom's finances are getting pretty low, so Medicaid is going to be a huge help. She is already on Alternative Care, which covers a percentage of her expenses, but when her meds cost (even with Part D) about $1600/month in copays and her Social Security is about $1100/month, I end up housing, feeding, transporting and clothing her at my expense. If she were in an SNF on Medicaid, housing, feeding, meds and anything considered medical care is paid for. It may come down to just that practical a decision - what can we afford as her children? We'd all like to contribute, but the reality is that we are approaching our own retirement with illnesses that have their own threats.
I want very badly to keep my mom in our home, which we've shared for about 20 years. Or at least keep her here until she is not really aware of the move. But I just spoke yesterday with a social worker from the specialist's office and she pointed out that being aware of the move will give Mom time to adjust to the new surroundings and routine. There is also the stimulation of any therapy or activities you would find in an SNF, especially one equipped for dementia patients. Medicare, on their website, has SNFs rated for the quality of their care, based on inspections. Take a look there to find other good facilities in your area. And get on the waiting lists of good, affordable, facilities so that when an opening comes up, you have the option of moving your Mom to something more affordable that won't cut back the care she has been receiving at the expensive facility.
Here in Minnesota, SNFs are regulated as to the amount they can charge. So they all charge the same $5600 and change. I wonder if the place your Mom is in has additional fees for extra services that make it more expensive. Or are you paying for a single room, which can add another $1000 or so each month? Maybe you and your dad could talk with the facility admin and see if there are ways to economize.
But I recommend that, before you do anything based on your love for your mother, find out, very practically, what your options are for both parents by talking with an attorney (to draw up appropriate documents) and a social worker (who will have a better handle on the expenses you can expect and any help that is out there). The practicalities may become a huge part of the decisions you will need to make.
Meanwhile, I go back and forth on the same issue - can I afford to keep Mom at home, caring for her (though I would need PCA help when I am at work, as the daycare she goes to won't work forever) or should I take advantage of how her expenses would be reclassified once she entered a SNF? I have her on a couple of waiting lists at some really nice places that do take Medicaid for a percentage of their patients. If and when an opening comes up, I'm going to have to commit to one or the other type of care. It scares the H___ out of me! I think all we can really do is get a good handle on our options and then wait until the decision has to be made, and make it with resolution whether we are 100% confident in it or not.
Best of luck with the decisions you will need to make. You, at least, have the help of your father and husband. But it's still going to be a bumpy ride. Keep using the forum. It's a lifeline full of the most amazing people.

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]


Sun Aug 15, 2010 1:39 am
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Joined: Sun Jan 24, 2010 3:27 pm
Posts: 26
Location: Illinois
Post Re: second guessing
Nandel8.... That is one of the first things my father did was contact his attorney. I was not there for the meeting yet dad said that not for me to worry things will work themselves out.
Robin.... Mom has a doctors appointment on monday and I am so glad you asked me that question because that is something I need to know.
Lynn... as far as my dad... we are in the process of moving my oldest son into dads house to make sure he is taken care of... (dad's suggestion) shocking! But my oldest jumped to the chance to take care of him. Dad is lonely and very much understood.
Kate.. thanks so much for the information. The LF were she lives now has a rateing scale from 1-5 being 1 is independant.. and 5 being 24 care. My mom is at a 2 which is independent but needs house cleaning done. Yes you are right the more care the more cost.

Thanks for all your help!.. xxxooo

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lots of love and prayers
Lynda


Sun Aug 15, 2010 10:57 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: second guessing
Lynda - that's really nice that one of your sons is going to move in with your dad. That should be a really nice change for your dad and I'm sure a good life experience for your son. Keep us posted on how your dad's doing, too, as well as your mom. 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 Aug 15, 2010 2:48 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: second guessing
Lynda, do you know who your dad selected for Power of Attorney and as Medical Representative (medical directive)? If not, you might want to find out. I would think that the attorney he spoke with encouraged him to select people to fill these roles. If he didn't, try to get him to do so. If something befell him that affected his mind or rendered him unconscious, and he hadn't specified who would make medical and financial decisions, you could have a real mess on your hands. Once something like that happens, you can't create these documents and expect them to hold.

Your dad's philosophy about everything working itself out is very much like mine. I may worry and panic, but in the end I know that we will all get through these crises. When I was as teenager, the Desiderata was really popular and I really bought into that line "the universe is unfolding as it should." I still buy into it. The philosophy is a great comfort.

BUT, I also believe that you can prepare yourself to handle each crisis to the best of your ability. Having these documents drawn up and signed while your dad is still relatively healthy mentally makes things a bit less challenging.

Best of luck to your father. With his cancer, it is going to be a huge help to have your son with him. You must have done something right to have such a responsible son. Congratulate your father on his 53 year marriage! I'm single, but well aware that spending that much time together with the same person can't be easy, regardless of how much you love each other. It's a real achievement.

Take care.

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 17, 2010 11:35 pm
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