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advice needed for parents
krob1967
Posted: Thursday, October 24, 2019 1:43 PM
Joined: 10/24/2019
Posts: 2


My Mom has been suffering from AD for probably 10 years, diagnosed maybe 7 years ago. we were very fortunate as it progressed very slowly at the beginning but the last 2 years has gone very quickly. my mom now suffers from sundowning and many days end with her not knowing who anybody is. she often is mad and wants to leave to go find her husband not believing that my Dad is right next to her (the strange man who is keeping her from her husband) she has tried to get out of the house and has scratched and clawed my dad trying to leave) my dad is 81 with limited mobility as his hip is bad. this makes keeping my Mom at home is difficult for him as she is more mobile. she is confused at all times and lack common sense in daily tasks so she can never be left alone, not even for a minute. needless to say this is too much for my dad to handle. they just left for florida for the winter and within minutes of getting there she left to walk home to her husband. i called him while he was driving around trying to find her. a neighbor found her in his garden shed hiding from the strange man. now 1200 miles away my dad has finally come to terms with reality that he is in over his head. moving my mom to a care facility has multiple issues the biggest of which is they both always promised one another they would never do that. my dad feeling doing this is him failing as a husband all the while realizing that trying to care for her is quickly killing him due to constant stress and fear of her taking off. while us kids have almost made it his only option(i think helping him to shed blame off himself) this will be a very difficult process for him. next big issue and even bigger is their financial position. they live in a seasonal trailer in wisconsin while here and in a trailer retirement park in florida. selling both their homes will at best yield $80,000 which will not go far in memory care facility. looking for advice and options on a path for us to take. This awful disease robbed my mother of her retirement and now we are just trying to give my dad a few years of calm care free living at the twilight of his life where he can visit my Mom and then relax when he gets home.any advice would be greatly appreciated
abc123
Posted: Thursday, October 24, 2019 2:51 PM
Joined: 6/12/2016
Posts: 670


Others here will have excellent advice and suggestions to help. I just want you to know my heart goes out to all of you.

The promise they made to each other is null and void. Dementia does NOT allow those types of promises.


Peter5
Posted: Thursday, October 24, 2019 3:40 PM
Joined: 5/30/2013
Posts: 1126


Your father, probably with you along so you understand, needs to see an Elder Care Attorney immediately.  It sounds like Medicaid will be the only way he can afford to place your mother, and he needs to get that ball rolling right away.  

Since Medicaid is a state program, he will need to decide ASAP whether Wisconsin or Florida will be home base.  The attorney should be able to help look at the Medicaid programs in each state and help him decide what makes the most sense.   


abc123
Posted: Thursday, October 24, 2019 11:21 PM
Joined: 6/12/2016
Posts: 670


To

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harshedbuzz
Posted: Friday, October 25, 2019 4:29 AM
Joined: 3/6/2017
Posts: 1827


What a nightmare. I am sorry you and your family are having to deal with all of this sad situation right now.

I was in a similar situation, with my parents spending summers at the beach 200 miles away and winters 1000 miles away in FL. While they loved the lifestyle, it was not sustainable with dementia and no meaningful support at such a distance. It was a logistical nightmare when things inevitably went sideways. The last winter they were in FL, mom nearly died because dad, who had as yet undiagnosed mixed dementia, was unable to recognize how sick she was or get her appropriate care.
Consulting with a CELA near me, confirmed my impulse to move them near me as the only tenable solution. It sounds like Medicaid planning will be necessary to provide care for your mom. A CELA is your best source of that information. If you and the rest of the family are in WI, it would make sense to consult one there. When we discussed the potential for staying in FL our CELA was very opposed to the idea as FL's system is a mess compared to other states, We ended up in PA, but I did give NJ a look as well. In NJ, Medicaid will pay for a MCF; in PA it's SNFs only. One interesting thing that came out of the meeting with the CELA was that mom could have held onto her FL property as an investment so long as renting it out kept it in the black. We did rent it out the first year they moved back to PA using a real estate company to manage it. Ultimately, we sold because the margin was slim and could have been wiped out by another increase in insurance costs or a hurricane. 

In your situation, maybe one of the children could fly to Florida and travel back to WI with them now. Many PWD get unsettled with physical moves from place to place, so their days of snowbirding are likely over. Once back, you could meet with the CELA as a family (probably best w/o mom) and decide on next steps and a Plan B to be implemented if your next steps don't pan out or if your father is suddenly unable to provide care because of death or disability. One third of caregivers do not outlive the person for whom they care; a frail 81 year old could easily fall into that third. 

I would certainly start touring and talking with the placement options in the area where they will be moving. You'll need a place that will accept Medicaid once they have spend down their money or outright depending on what assets they have. As a Medicaid spouse, dad can keep a home, money to live on, a car, etc. Not all MCF do take Medicaid and some have the expectation that a family will self-pay for 2-3 years before converting to a Medicaid bed. If either is a veteran, check to see if there are any veterans homes in the area; the one near me is very nice and made my personal "top 3". Some states have "board & care" homes which tend to be less expensive and can be more homey than a SNF.

Good luck. I do not envy you what lies ahead logistically. 



MN Chickadee
Posted: Friday, October 25, 2019 10:13 AM
Joined: 9/7/2014
Posts: 897


Ah, the promise to never put your spouse in a facility. I totally understand the sentiment, but people don't have a crystal ball and sometimes fail to realize what is in store for them. 

So she is wandering, and her needs exceed what Dad can do. He has his own health problems and he is in his 80s and needs his own health and needs attended to. There comes a point where you don't have options. Her (and his) care needs HAVE to drive the decision making. Not promises or wishful thinking or guilt.  She is not safe at home right now if she wandered and was found by a neighbor. That ended about as well as you could possibly hope for, but she may not be so lucky next time. Consider Dad's quality of life in his final years as well. If it hasn't happened yet, she will likely have more issues in the future. Alzheimers often brings incontinence and night waking as it progresses, both of which are game changers for caregivers and are seriously exhausting. 

Dad made a promise, but try to view it like this: he was promising to always look out for her, to make her comfortable, to make the best possible decision for her. That's his and your job now. It's a tough job, but somebody has to do it and it's the right thing to do. At the moment that means more care. They either need to have someone coming to the home or move her to a facility. 24/7 care is expensive, even more so if it is in their home. You need financial planning with an attorney. I would also point out that today's memory care facilities are not the nursing homes they may have seen their parents in or have been envisioning. Staff training, care, and rules have changed drastically in the last decade or two. Many memory care facilities are home-like settings with the routine a PWD needs, good food, natural light, visiting pets, fenced outdoor areas, activities that a PWD can keep up with. After an adjustment period, my loved one really flourishes at her care facility. If anything her cognition improved because she was finally getting the routine, care, and oversight she needed. 

I would immediately consult an elder law attorney in the state where she will live permanently (as someone else stated, switching between two homes is probably out for her now.) An attorney can look at their finances, property, and income and advise the best way to pay for care. It likely means spending down assets and getting her on Medicaid. Many facilities accept Medicaid. These rules vary state to state and the rules are strict, so you do want legal advice to make sure it is done properly. The attorney can also help make sure dad is taken care of financially. 

I want to add I was in a similar position (my father is 80, was hanging on taking care of mom at home but was totally overwhelmed.) The last 6 months of having her at home were very hard on him. He was open to moving her but I had to take the reigns and make it happen; there was no way he had the mental gas in the tank to do so and it was also a very difficult thing for him. He was exhausted and it was taking its toll on his mental and physical health. For months after she moved he was still a shell of himself and I worried he would never bounce back and regretted not moving her sooner. Now after more than a year he has come around just a little, and is slightly more energetic and like his old self but we definitely lost some of him in this process as well. Mom was robbed of so much, but he was too. He missed out on a lot and time with his grandkids. I am grateful we found a good place for mom and that he can do his twice a week visits but leave the day to day care to professionals and live his life now. He's slowly finding some of his own peace and enjoyment in his final years. 


abc123
Posted: Saturday, October 26, 2019 3:23 PM
Joined: 6/12/2016
Posts: 670


Hi Chickadee. I am curious. Does your Dad live with you or does he have his own place? My Dad is currently my Moms full time care giver. He is 83 and very healthy and active. He is doing everything on his own, including what Mom used to do in a big home. I’m worried about him as much as Mom. Thank You.
MN Chickadee
Posted: Sunday, October 27, 2019 9:22 AM
Joined: 9/7/2014
Posts: 897


abc, you are right to be. The spouse caregiver can get lost in the process. My dad has his own house. He was actually keeping up pretty well for a guy in his 80s. Doing everything mom used to do plus everything else.  He put every last ounce into keeping her home and when he was done he was DONE. In spring he went from "we might need to move mom by the end of the year" to "it has to be now I can't go on" in August. Incontinence was the big thing that tipped the scales. Cleaning up an ornery adult and the bathroom many times a day was such hard work. We scrambled and moved her more quickly than was comfortable, though it worked out in the end. He hit a wall, and after she moved he was literally tired for a year. Like I said, he is just now starting to be more active and have some motivation to live more fully. Looking back, I wish I had insisted on more help for him in the home. He didn't see how trying to do everything was actually a detriment to both of them and actually not helping keep her at home. Pacing himself may have preserved more quality of life for both of them.  And I honestly wish we had moved her 6-12 months earlier. It wouldn't have made a ton of difference to her, since the process would have been about the same (awful two month adjustment period followed by settling in and being well cared for and reasonably content) but I think it would have preserved a lot of dad. We pushed it just a bit too far. Hindsight is 20/20. Each couple and individual is different, as are resources and circumstances, so your mileage may vary. But do keep an eye on it, and have the tough conversations when your heart says you need to. It will help prevent you from losing two parents to this horrible disease instead of just the one with the diagnosis.
Sayra
Posted: Monday, October 28, 2019 5:50 AM
Joined: 8/10/2016
Posts: 1746


ttt
krob1967
Posted: Friday, November 1, 2019 10:00 AM
Joined: 10/24/2019
Posts: 2


My parents live two hours north in there own place during summer and then go to florida for the winter. at both places my dad is sole caregiver for my mom. it is way to much for him and likewise he is who i worry the most about since it is taking a huge toll on him.
 
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