So Many Questions and Some Insight Perhaps


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So Many Questions and Some Insight Perhaps

Postby stillkicking » Tue Apr 18, 2017 12:11 pm

Hi Everybody and Anybody,

My wife (65 years old) finally receiver her diagnosis, from tentatively Parkinson's, to confirmed PSP about 2 weeks ago. It was devastating as all here know. It was however not completely surprising given how we got here. Her father almost certainly died of PSP at 78 after 8 years of being diagnosed as Parkinson's. Our new family doctor only referred us to a Neurologist because of the heredity of Parkinson's and not because of symptoms (which were in hindsight abundant). The Neurologist preliminarily diagnosed Parkinson's in January/17 and confirmed PSP after a PET Scan in late March/17.

The weight loss was dramatic from 2014 to July 2016. She lost about 46 pounds and was down to 98 lb (she is 5'9""). I had allowed her to not eat because she complained of chronic mouth and tooth pain, which I knew were true because of a torturous history of dental implant and denture issues dating back for a continuous 12 years or more. Finally I arranged a personal trainer and I took control of her nutrition with heavy emphasis on Protein and Fat intake. Please note, that although doctors were concerned, that nothing was suggested or prescribed nor advised.

The falling began in about January 2015 and was at about 30 times per year by January 2017. The Carbidopa/Levidopa seemed to help somewhat from February to April, but seemed to be wearing off just prior to the PSP diagnosis. The falling, however, has largely stopped since the drugs and because I am far more careful in her care as is she. Physically she is now weighing in at 115 lb and tests at average, or slightly below, for her age as opposed to at 85 years old back in July 2016.

The choking on liquids started about 6 months ago and choking on food has progressed to where she cries when trying to eat sometimes. There is little i can do except cut her food up small and emphasize the proteins over the carbs.

Her speech has been deteriorating steadily since early 2015 but she still talks clearly enough as long as she repeats her thoughts to me. She is rather emotionless about her plight (she has always been the tough one) and I am basically a weepy mess when I think about all of it (married 42 years).

I have some idea about the road that lies ahead since I saw it with her dad. Both she and I calculated that Val had it for 5 years progressively to a wheelchair in the final 2 1/2 years with progressive dementia and finally chocking/starving to death.

My wife had a big fall in October 2016, with total incontinence and disability for about a month and a half due to the trauma (no brain or break issues luckily), with very pronounced dementia like symptoms.

I have been trying since October to look for a Bungalow style house since currently we own a 2 story home. She basically lives on the lower floor while I live upstairs. We need to get on the same floor and have a shower facility for her for when she loses more body muscle control. I don't think a stair lift will cut it when this happens.

I have some serious and expensive decisions to make very, very shortly. It is clear we need a bungalow, however do we buy or do we build. I can buy a place and retrofit for a wheelchair when we are there, assuming that other losses that might require a nursing care facility, do not immediately manifest. She is a smoker and since that appears to be her last remaining vice and pleasure I will do anything to keep her smoking and happy. I can accomplish this with a Sun Room or more likely a double attached garage, modified with a stairless smoking area for her and wheelchair ramp when necessary.

Buying a house would be cheaper than building, however I could build within 20 minute walk of the hospital and a nursing facility for about $200,000 more. It would also have the advantage of being designed accessible from the onset. It would consume most of my cash resources since both options result in a cost more than $300-500 K more than our current home. Don't get me wrong, we own a small company that I built and have a modest but comfortable future income and investments.

I am having a horrible time with the decisions since I am too young (63) for Assisted Living (plus it would bankrupt us if it was for a long period), a built bungalow will take 1 year of her life and might be all for naught if she needs Nursing Facilities in a year followed by death in 2 after that, and buying would be quick without renovating for the future immediately, but could result in us buying a place that my wife might not like and that might not resale very well.

I really need advice as to where she is on the timeline. I have seen reference in the Forum on "stages" but not found those actual stages yet anywhere. My principal worry is that whatever I do, it might be the wrong decision that is not the best one for her and that robs us of the time that we have left together. I am seeing some deterioration on a weekly basis and I am concerned that we might be closer to the end than I am reckoning. Her personality changes began about 2012, so she might actually have begum on her path about 4 years or so ago and not the 2 years that are obvious.

Please,any advice would be greatly appreciated!

Pete
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Re: So Many Questions and Some Insight Perhaps

Postby myownwoman » Tue Apr 18, 2017 1:00 pm

Stillkicking: So sorry to hear about your wife... and what the future holds for you both.

You asked, and so I'll answer the questions about how to spend the money based on my past decisions... right or wrong.

We had to move because of all the stairs and the arrangement of our old house. We moved into the city where services were more easily available. Good decision. The new house wasn't built to be disabled accessible but was all on one floor and had wide doorways.
What I should/might have changed: taken the carpet out of his bedroom so we could have more safely used the Hoyer Lift; made the master bath (largest in the house) totally open so we could have gotten a wheelchair in there to bathe Phil. That could have been done so it would look nice for a future sale.
Phil stayed here and didn't go into a care facility; but if that is something you plan for in the future for your wife, then that will alter your/her needs. Just remember that whatever you build or buy-and-alter will need to be resold at some point. What is your market for such a home?

Same thing for a car. We bought a Honda Odyssey because it is disabled-friendly and can be altered in a number of ways for accessibility. Once again, you'll never get your money back out of an altered vehicle, so, if necessary, buy one already altered. I didn't alter the Odyssey and am still driving it 2 years after Phil died because I like it. In retrospect, changing the front seat to one that extended out of the car and then retracted back in was the one I should have done; retrofitting to accommodate a wheelchair would have been a total waste of money.

Money: I spent Retirement Savings on Phil's care and I don't regret it one bit... ever! and I'd do it all again. But now I'm paying the price. You say you have a business and the prospect of earning more. You are lucky, but never forget that that can change in one visit to your doctor. It's unfortunate, but being a caretaker takes a huge toll on the caretaker's health.

I don't think anyone can tell you exactly what you wife's progress will be or how long she'll live. When we got hospice in to help, Phil was only suppose to live a few more months; he lived more than 2 years longer. It sounds as if you're trying very hard to help your wife. Thank God for caretakers like you! Your wife is blessed.

I wish you the best that can be on this awful journey.
Kate
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Re: So Many Questions and Some Insight Perhaps

Postby stillkicking » Tue Apr 18, 2017 1:57 pm

Thank you Kate!

Our income does not require me to work any longer, however it is a gradually declining resource (derived from royalties which I earned). I have already designed a Master Bedroom for the build that has a 3.5 ft X 5.5 ft shower with a 5 ft turning radius within the ensuite itself and built in benches for transferring her to and from the shower. Anyone would want it. Handicap wheelchair showers have no market and ruin the resale vale, which I must consider since I will be alone soon enough. I also have designed key doors to 36 inch and I have an open concept Kitchen, LR and Great Room, as well as an open front bedroom/office/flex room for when she is immobile, so that she has wheelchair access if necessary to her usual bedroom which most people call the Family Room - her Cheetos and TV will now be replaced by a glass of water with ice and a sip straw as time progresses . She has slept in the Family Room for most of our marriage which is her choice. She complained about not having her own private bedroom, but has had one for 13 years and has used it only once LOL.

I am a big man and in very good shape now. I apparently inherited my mother's genes (live to 90+) as opposed to my father's genes (45 or less). I can take care of the physical part fairly well. I will be hard pressed to cope emotionally however since that is my nature. I will not be able to cope with the eventually feeding difficulty. I do that now but when it becomes blended foods that she will refuse to eat, crying, and incessant choking, as well as total incontinence, I will not be able to handle it. I will not be able to insert a catheter since 1) she would be mortified 2) I am afraid of harming her. Also, I suspect the dementia will overcome her body issues. At that point, I would have to consider a nursing home. Unfortunately, if I do not continue to work out 3 times a week (takes 3 hours each), I will soon deteriorate myself and be totally useless.

The problem with buying an existing home is actually only the bathroom, since most renovations to most bathrooms would destroy the resale value and would have to be undone at significant cost. I must be careful with the money, not only for my wife's sake and my own, but I also have to leave something for my adult kids since one already has some serious health issues.


Than You Again,

Pete
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Re: So Many Questions and Some Insight Perhaps

Postby Robin » Tue Apr 18, 2017 5:42 pm

Pete,

If you go to brainsupportnetwork.org and do a search on "PSP stages," you get some results. The first two documents that come up are probably what you are looking for. I don't really know how valuable that info is.

I think what you are looking for is an estimate of survival time. Again, if you go to that website and do a search on "PSP survival time predict," you'll find a handful of scholarly articles on predicting survival time in PSP. These are averages. They happened to be accurate in my father's case but not in everyone's. Of course the ranges are fairly large for many of the survival times.

Also, inherited PSP is extraordinarily rare (but certainly possible). Could it be that her father and your wife have frontotemporal dementia? That is far more likely to be inherited. I hope you'll make brain donation arrangements for your wife! As you may know, that's the only way to confirm the diagnosis.

Good luck,
Robin
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Re: So Many Questions and Some Insight Perhaps

Postby stillkicking » Tue Apr 18, 2017 8:42 pm

Thank you Robin. The Neurologist was very certain because of the PET Scan. The diagnosis is based on the synchronous deterioration of six different locations in lobes within the brain. I am not suggesting that genetics is at play directly, only that certain genetic characteristics (private) may be at play. They shared many of the expressions of PSP / Parkinson's and although he was not diagnosed in detail, my wife was. Indeed it was the reference to my FIL Parkinson's that got us into the Neurologist, not actually the physical symptoms that were at play.

Thanks Again,
Pete
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Re: So Many Questions and Some Insight Perhaps

Postby HelpingDad » Thu Apr 20, 2017 3:21 pm

It seems you are concentrated on the bathing issues with the design etc. Have you ever considered just sponge baths? We have gone that route about 2 months ago due to safety and budget concerns. There is also a possibility, everyone progresses different, that even a wheelchair may become not viable in the future. I am just tossing out some other details to look at long term.

Good Luck
Ron
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Re: So Many Questions and Some Insight Perhaps

Postby stillkicking » Thu Apr 20, 2017 7:16 pm

Thanks for the suggestions Ron.

I am concerned that the time that a wheelchair might not even be of value may come too soon and that all may be for naught in that regard. I am just trying to do what I can do that will have me prepared for the most possibilities. I have decided that we cannot stay put in our two story house since it is pretty unmanageable for most possibilities. There is no bedroom on the main floor where she spends 99.9 % of her time and the 1/2 bath on that floor is not really amenable to expansion into the adjacent laundry area for a couple of reasons that work at cross purpose to expanding into that area.

If we are moving anyway, then the best thing to do is to plan for the most probabilities. I have decided that building will take up too much of her remaining quality time and will tie up most of my retirement funds in a single investment (stupid thing to do financially). I have decided that it will be quicker and cheaper in the longer term to buy a place and modify the basics such as grab bars and to leave wheelchair adaptations to when they are required. I can pick away at other renovations concerning our personal tastes, as time and circumstances dictate. My biggest fear is that with our medical care system, that by the time she is recommended for placement into nursing care, that she will be at the very end before she is actually placed.The simpler I can make a place work for all eventualities, the better I will be able to manage her care myself for a longer time.

Thanks again for your help.

Pete
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Re: So Many Questions and Some Insight Perhaps

Postby HelpingDad » Fri Apr 21, 2017 9:07 am

I live in a 2 story home also. When dad moved in about 2.5 yrs ago he needed more like assisted living so I set him up in the basement, it's finished. That worked ok for just over a year then I had to get a stair chair installed since it was to unsafe walking up and down the steps. That setuo worked good until just this past Christmas season and he became more like 100% dependent care. I cleaned out the dining room on main floor, hung some curtains up over doorways and made that his bedroom. He sleeps in hospital bed and has tv plus I rigged up a poor man's call button using a wireless doorbell. So far so good.

Ron
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