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I have eyes and can see he is falling apart. Trying to figure out what to do. Where can I post photos and get advice?

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HI Danamovedon (again ;-),

I'm not responding quickly enough, it seems.... Demensia huh? He seems so lucid but then he is showing very subtle signs of degraded effort mentally. My wife's mother has it, or Alzheimers (which I thought were interchangeable), and she went down fully and is now forgetting how to walk as she is in a wheelchair so much.

Judging from the other threads I am seeing on this site, I am about the zillionth person to be going through this. I figured as much, but was really looking for an outlet, as many here may be as well, not so much to vent but to expose the doctor. I know it sounds petty but how many are under his care? How many others are being neglected as he rings the register? I should just move on but find it hard to do so.
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Hi terryjack1,

Thanks for the smoothie recipe. I will give that a try.

Best, John
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Hi Danamovedon,

Thanks for that article link and note, very helpful and I have circulated it to everyone (wife, sister, brother).

My sister (60) has been really MIA. She has plenty of time to go on cruises 3-4x a year, buy her retirement home, be on Facebook but she has not been involved in any substantive way. My brother (43) is just moving back into my father and his mother's apartment. He's self-consumed with trying to make a buck here in NYC, and I understand his plight, but has he chipped in any energy? No. My big bad has to do with my trashing his wife, who seems to have really stepped it up since I came home. I wrote this, yesterday, and she was all over it:

The subject line was: "Your room stinks!"

Dad:

FYI: the urine odor in your room is very strong and overwhelming. MamaC is so close to you I don’t think she smells it anymore….

I have offered a maid service, as well as to even be your maid myself, but you resist.

Now, someone has got to get in there and flush that room out with bleach or the bacteria and other grime is going to just add to your ailments and make you sicker.

You say you want to get better and then you sabotage the help. Please, I’m sorry if you don’t like hearing it but trust me, even a real lion’s den is hosed down everyday….

Stop being a piglet and either ask MamaC to clean it, Kareem, or (as your last option, please…) I will come and do it myself!

Love, John

I know this sounds harsh, but my father is a no BS kind of guy from Brooklyn. He'd rather hear a direct point being made than any syrupy talk. Sorry if any of what I am writing has offended....

Here was the result:

His wife wrote me this a few hours ago:

"Hi John,
I found the culprit, there was residual urine spilling over to the bottom storage container beside JB's chair. I Will clean both the bottom and the top container on a DAILY BASIS from now on with a good disinfectant. Regarding the EXPENSIVE ANIMAL URINE CLEANER, I don't think that we'll need it at this time. Regarding the GLASS CONTAINERS for him to urinate in, I don't want to use any GLASS around JB because he BRUISES AND CUTS very easily and then it becomes a huge problem of coagulating his blood. I will have to continue purchasing the plastic containers ( which are lighter in weight) but will WASH AND DISCARD them more frequently. Thanks for the idea of a dish washer, but I don't wish I had a dish washer - running HOT WATER and patience works equally as well. We'll talk."
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My father is also 88 and not the executive that he used to be. He has no natural hunger pangs and doesn't eat unless someone prepares the food and sits down with him. He doesn't initiate anything, sits in front of the TV and naps. I try to initiate activity but he's not really interested. It's difficult for him to walk and focus. Nothing holds his attention. Reading is hard. He picks up random pieces of paper and puts them down again. In the evening, he gets a surge of anxiety. He calls me several times to discuss things we have already discussed but he doesn't remember. He's worried about upcoming appointments. He thinks I'm not being straightforward with him and he's frustrated with my inability to explain things to him. That's dementia. It's shocking if you don't see it coming and discouraging when you do. Nonetheless, any good medical professional would be concerned that family members be aware and available to provide a safety support net for a dementia patient. It takes patience to work with this disease.
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olinda, re the pt and ot, yes, there is a way - talk to Medicare directly because typically they can do way more than those number of visits
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Hi Llamalover47, I love llamas too. The doctor he is seeing on Park Avenue and 80-something street, is just that type, and had bought the practice from my father's longtime doctor. Both my father and his wife have been seeing this guy for 25 yrs and as has been discussed here already, they buy into him a lot, although my dad does hear me and points out how he sees the guy gaming (every five minutes he walsk out of the examination room, as though something has tugged at him, he closes his office door and reemerges five minutes later. He does this constantly, my father notes, and I told him it is because he is Googling because he doesn't now what he is doing! Of cours,e that is a bit harsh as he might be 'drilling down deeper', and if he had noticed my father had become a ghost of a man under his own care in under a year, I'd give him that, but my impression of this guy is he is all about the money.
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Thanks for the advice, Veronica91. He likes the Boost and is responding to it. Actually ate some pizza today. I can say he seems to be showing some signs of improvement, but is a long way from being what I guess you could say is 'better'.
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Hi Mbmarc,

Yes, the nurse who came to check him out (after I pushed his doctor, who operates what can only be described as a mill, to send one) ordered an occupational therapist and a physical therapist. Both of whom showed up announcing they could only do two and four visits respectively, and of them this first was to 'evaluate'. To say they were not only useless but lazy too is an understatement, and showed me how some people who work in healthcare for Medicare are, for at least those I've encountered in my very limited experience, are gaming the system big time and far from interested in providing any kind of healing effort. Still, I believe they can be pressured into 'caring' and I put this post up hoping there was some way I could use the internet to do that.
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Hi Danamovedon,

Thank you for giving this your time. I tried my noise-cancelling Bose headphones, I tried ear plugs, I tried noise-cancelling ear buds, wireless headphones, and ambient music. I am still trying to find a solution, but what I think is is issue is his mind: he can't stop it and it is churning. I fear he may have some instinctive response to his decline and be in a kind of shock. He noticed it too when on Memorial weekend the construction let up and still was unable to sleep.

I have been pushing preteen on him and he is getting color in his face. The new mediation his doctor gave him, after I insisted he look at his legs, has really helped reduce the swelling. He is still slurring and complaining (less so today) of foamy sloth.
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HI JoAnn29:

I am in the beginning stages of learning about all of this. My dad has always been pretty much on top of his own business, with his wife helping, but as I delve in I am finding all sorts of room for improvement. Thanks for your advice. Much-appreicated!
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Hi jkimbrell,

He is 88. She is 64. I own a small business in Hawaii and am 52 and unemployable (that's why I own my own business). I am in print publishing, specifically golf. If you know anything about print AND golf you know my situation.

I can't walk away from the business and at the same time I can't save it. I have been back at school trying to finish my degree to so I might even get a job interview if I came back. Our only real savings is our home and we are in the midst of adding on a bed and bath for rental income. If you ever lived in Hawaii you'd know there is no way I can leave a project like that unattended.

So, no. I can't pull up stakes and easily move. But, given he and my wife and all I really have, and her 82 yo mom is suffering from advanced Alzheimers, and is in a home, and she is miserable with our business as well, the notion has occurred to us. Just not easy to do right now. (We are ambitiously thinking we might have the add-on done by December and rented, then we'd relocate to NYC to care for both our parents.)

I have already gotten permission from the admin asst at the geriatric center to call her directly each week in case there is just that, a cancellation. She is my new buddy and I promised flowers. The paperwork should be here shortly and that'll be ready.

I have tried to get him into things He half-wrote his autobiography and I spent a whole summer doing video vignettes of his career-making moments in advertising, building an archive of his life's work on his website, editing his chapters and posting them online, and creating a digital archive of his multimedia work. He was to add to it here and there but has drifted over the past couple of years and basically watches TV and does his crosswords. He is definitely fading and I know he knows as he is very lucid, most of the time.

Thanks very much for writing. I really appreciate your taking the time.
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At this point, I would just take him to another doctor. Wouldn't even ask him.
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I have a discussion with your dad and express your concerns, help him to find another physician if he agrees. Offer to take him, explain your concerns to the new doc. I can understand your concerns, there are several red flags. I'd be concerned too, if this were my dad. Boost is good, but it doesn't taste so good, however you can use the carnation instant breakfast or ovaltine and add yogurt, peanut butter, cottage cheese, fruit and run it in the blender to make a smoothie that has good nutritional value. Anything you can get him to eat or drink including milkshakes. Contact your local area agency on aging and see if he qualifies for in home services, good luck
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Caregiverbob: As his speech is slurred, has he had a stroke?
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Balanced vegan diets can be complicated for seniors, especially if they were raised on meat.

health.usnews/health-news/health-wellness/articles/2015/02/13/older-adults-double-your-protein-intake-for-better-health
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Sounds like you need to get on your father's permission list to talk directly with his doctor about his healthcare and/or find another doctor that gives you confidence. Most seniors don't get enough protein and most protein sources are meat. Get your father some earplugs.
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Be aware, that health insurance suppliments may not allow out of state Drs or hospitals. My MILs was only for Fla.
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Hi Salisbury!

I know he would not want to be away from home in a hospital unless it were literally on his death bed and even then I'm not so sure he'd want to be away from New York. This is a man who has the city in his DNA and I almost think removing him from here would be worse for him. Thank you so much for suggesting Geisinger. If I reach a point where there is no other alternative, it may be us pulling into their ER..... Many thanks again, John
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Hi Lilacalani!

I will have to ask him. My sense is he has tried everything at some point in his life. He is so fragile and boney I would imagine a Chiropractor would be hard-pressed to do much adjusting although I know they are excellent when it comes to overall health. Jack (dad) is schooled on nutrition and is primarily vegan, but will eat protein to add weight, even if it screws with his digestive system, which is the case now. Still, he seems to be improving with the added calories and I will ask him your good questions. Thanks for your time and energy, best, John
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SandraO, thank you for your response. He is extremely smart and open-minded for the most part and hopefully another doctor will improve his situation. His legs have improved and he has color in his face again, and says he finally slept last night. Again, thanks so much for replying.
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Some of the signs I noticed with my dad was his left pupil would start getting larger than his right and his speech would get slurry, I would check his sugar levels with his glucose tester and it was usually a little high so I would give him a 1/4 tablet of his diabetic medication. (This would usually happen several hours after lunch and about 5-6 hours before his round of his night medication) now if his pupils are both the same size and if he mentioned, that he felt a little drained of energy i would give him a glucose tablet (a raspberry or fruit punch was his favorite)
His legs and feet would swell up pretty bad, well were waiting for a refill of his hypertension medication to be delivered and he had been out for 2 days and his swelling had gone down. When they did arrive i gave him the prescribed amount and his feet and legs ballooned back up so I started cutting in half and it helped some then i cut them in 1/4 and reduced the swelling even more. So I started giving a 1/4 tablet every other day and it eliminated the swelling totally. I found what worked and spoke to his doctor and he approved and when they ran blood test his levels very good and the doctor was now asking question about all the signs i was able to observe.
As for ensure and boost my dad liked boost for diabetics and they came in a case of 12, which worked perfect for our budget. Another tip we found out was in the begging, he would get sore on his feet and I would soak his feet in Epson salt and let dry, then apply diabetic lotion, i would wrap his feet in a towel and place on a heating pad. He never complained about his feet being cold and the sores healed very fast. It even cured the discoloration in some toes. A foot massage frequently helped blood circulation and brought comfort from diabetic pain.
I hope this may help, write down some changes you notice and dont hesitate to ask there doctor question. My dad was taking his meds in the morning and in the evening. Once we started adjusting I would fix a lite breakfast, a good healthy lunch and dinner and it helped balance his pupils and speech
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You'll have to change docs. Get one who knows what they're doing and doesn't constantly look at his watch! Think that doesn't happen; think again!
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Olindacat, July is too far away take Dad to the urgent care clinic at a reputable large hospital. The extreme weight loss and edema in his legs are signs of a serious illness. I can't tell you what but he needs tests, a diagnosis and treatment.
Write down all you can remember including and drugs and OTC meds he is taking.
Ensure is perfectly good as a supplement if dad will drink it. Boost tastes nicer but is not better
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You will have to follow up on your Dad's doctor's care and recommendations. Sounds like your situation is one you can't avoid! You've got to get your Dad better healthcare providers or personal nursing service if possible. My mother's doctor was so defensive when I questioned him about why my mother was on diabetes medication when her blood work clearly showed no indication of high blood sugar levels. She peaked at this particular point, but even then the readings didn't warrant the expensive medication he put her on. He took her off of it after I gave him my interpretation of the blood work results. Based on my own research, it was completely obvious that he was not interested in my mother's health...only her insurance and how much he can drain from it! Hurry and get a new doctor! Do your own research to learn about what they are doing to your Dad! Object if you notice any discrepancies with the doctor's recommendations. My parents are old-school in that they believe that anything the doctor tells them is the truth. They didn't realize before now that the doctor and pharmaceuticals put people on medications that they don't need and they are typically not cheap! Sounds like your Dad is similar and I completely understand. They came from a generation and time where profit wasn't the primary motive in treating illness. Its the sad truth of our system now and illnesses aren't being treated...the symptoms are being treated and in doing so...more symptoms and side-affects are created. Too many of us are ignorant of this growing threat to our existence or just not concerned enough about to question it. We have to do our own leg work now, because we can no longer trust our systems to look out for our best interest.
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Try a different Dr.
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How old is your dad? How old is his wife? Is there any way you can move back to New York from Hawaii to help them? Do you have any siblings on this continent that can help? The geriatric specialist is a terrific idea. That is where you should start. Maybe you should set a reminder for yourself to call the geriatric specialist's office twice a week to see if there are any cancellations where they can 'fit' you in. Go ahead and get your paperwork filled out in case one morning they tell you 'Yes, come on down.' You should also ask them to put you on a wait list for appointment cancellations. Is your dad still working? My 80 year old mom is and it is very helpful for her. My mother in law lived alone and attended university up until her 90th birthday. She had back surgery and it forced her to be inactive. She has drastically declined in health since she became less active. If your dad is not working still..... he may need a project to keep him focused.
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I agree. Change doctors and, if i may say, it is so much easier to do all of this away from New York. So much waiting and so expensive. My mom was admitted to a senior behavioral clinic at almost at ONCE when it was determined that she needed it. I think she waited three days.

You might want to contact Geisinger Medical Center in Danville, PA. It is only a three hour drive from NYC (so is Ithica...) Award winning hospital. I brought my husband there for chest pains at 10:00 a.m. one fine day, and he was in his private room after having a stent placed in/near his heart by 3:00 p.m. Five hours after we arrived!!!!!!!!!!!!!!!!! Check it out! http://www.geisinger.org/
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Would your father consider seeing an acupuncturist or chiropractor? Both are usually well schooled in nutrition and circulation as part of their overall education. Many also work with or know qualified doctors, whom they could recommend.
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Is your father agreeable to changing doctors? Can he change doctors with his health plan? There are many things that cause feet to swell including congestive heart failure. He needs another doctor, a competent one.
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He lives in his apartment in Manhattan, rent-controlled, with his wife who is not a care-giver, and wants as little to do with caring for him as possible. He is very bright, Columbia grad, MI, longtime ad exec w own NYC agency, etc. Has Medicare. Seeing a doctor on Park Ave who I met for first time the other day, and seems like HE should be retired. The doctor is so cheap he refuses to pay a nurse to help him. My after has lost 35% of his body weight in eight months and this doctor didn't even notice that, or his extremely swollen legs. His feet look shocking. I never knew my father was in such bad shape until this visit. I live and work in Hawaii. He refuses to tell me so now I am playing this game where I have to figure it out for myself. I want to expose this doctor for leaving my father to rot like this. It is infuriating. The doctor suggested we weigh him during this first visit (first for me), and then forgot! OMG! I made him get on the scale. Then the doctor gives me an RX for Ensure!!!! OMG again. I went to Duane Reade and bought him some boost. I asked the doctor for a more aggressive diet plan and it fell completely on deaf ears. He needs to me reported but I don't know where. It is insane. After forcing this doctor to look at my father's feet he ordered in a nurse to visit us as I said he needs some kind of physical therapy. It didn't occur to me to ask for a podiatrist! But the nurse say immediately the need and gave us a number to call for one. She also told me to call Cornell for Geriatric Specialist, which I immediately did and have an appointment for July, which seems so far off. I am supplementing his almost vegan and very healthy diet with Boost and some Hagen Daz. There is construction going on street level on 58th and 2nd for over a year. All day and night and the poor old guy can't sleep.
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