I am in tears.
THREE WEEKS AGO, my Dad was walking 2 miles x2/week and swimming 10 laps x3/week in an Olympic pool. While not in perfect health, suffering with Parkinsons and a touch of Alzheimer's, he was in better health than 90% of men at his age having struggled to keep up with a 70 y/o wife who has lived the Paleo Life for the last 50 years. (She could seriously kick your 25 year old Crossfit ass, don't laugh, her biceps, sparkling eyes, and 6-pack don't lie.)
Then at 80, six weeks ago, he was diagnosed with a rare melanoma of the eye and "given" surgery to "cure" it. In three weeks he went from being "my dad" to a shell of a being. He is now in diapers, barely able to open his mouth open for meals, and being drugged with sedatives to stop him from "escaping" during the night.
I told the Dr.s (Kaiser, yay :( ) that he was Gluten intolerant, assuming he'd get more protein for his hospital meals. NOPE - he was given only fruit and veggies. WTF!!!
Now he has been transferred to "assisted living", where the staff and Dr.s look at you with condescending eyes and blank stares when you suggest their diet of Ensure *might not be helpful for someone who should be a Ketogenic diet. (Sigh, tears, anger...fear.)
Do you have any advice? I could seriously use medical experience right now. What do I say to get the right help/treatment/diet...and a peaceful end.
I am shattered. This is the only man who has ever understood "me". He has loved unconditionally and never been less than a "Southern gentleman". Kindness and support have been his only way of being...He is too much of a man to loose this way.
How would you deal with my situation? What would you tell the staff? What would you do yourself? Help. I'm not normally one to ask for help. But I'm really overwhelmed with not only the incredible medical incompetence that I'm experiencing, but also the loss of my Dad.
asked byMarie (4878)
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on September 14, 2011
at 02:59 AM
I am ashamed of what we feed our elders in nursing homes. We've watched my husband's grandparents accelerating decline, I believe in large part because of institutional food and over-prescribing of meds. I wonder if you could find a doctor to "prescribe" an optimal diet for him. If they have to comply with doctor orders for meds, I don't see why they wouldn't do the same for food.
If they aren't able to come up with an acceptable menu, is there any way that he could be at home with a nurse? That way he could have the home cooking that keeps him healthier. Do they allow outside food? Could you bring him 1 meal/day? It would be a major pain, but might be worth it if it helps him recover more quickly.
Sometimes these kinds of issues are transient after surgery, we've been worried that we've "lost" grandpa a few times after surgeries, and somehow his brain has rallied, bringing back a degree functionality. We were told that anesthesia is hard on people with Parkinsons, and they sometimes take longer to recoup from surgery. As much of a bummer as the sedative is, it might be necessary to keep him from trying to get up and causing further injury to himself for the time being, the last thing he needs is another surgery.
You have my deepest sympathies, I hope your concerns are respected, and that your dad hasn't suffered irreversible harm.
on September 14, 2011
at 03:29 AM
God this is heartbreaking. I can somewhat relate, but nowhere near what you are experiencing. My father has had health problems over the past few years and been admitted to the hospital several times, and to assisted care facilities to recover post-surgery, before returning home. Every time when we would visit him -- whether at the hospitals or the care facilities -- all of the places had him on HORRIFIC diets.
We had to remind these so-called "medical professionals" that my father suffered from Diabetes and stomach ulcers and could NOT eat the things they were giving him. But they either ignored us, or just didn't have the knowledge needed, and would continue to feed him white bread, syrup-filled fruit cups, and fruit juices. They would also give him mashed potatoes and spaghetti. It was ridiculous.
Finally, towards the end of his most recent stay at an assisted care facility, we forced a nutritionist to change his diet. They put him on what they said was a Diabetic diet... but a lot of the food items were the same. I have no idea what made it "Diabetic" in their minds. He was still eating high-sugar fruits, being given fruit juices, and other high-glycemic carbs.
We reminded and pressed upon these "health care professionals" every day, to no avail. I honestly don't know how in the world someone is supposed to get through to these people.
The only advice I can think to give is to persist and pester them every day until they make a change. And, after they "change" really look to see if they made a difference. So many times we were being told that my father's diet had been changed, it it really hadn't been.
If anything, I say find your father's primary care physician that knows about his condition and agrees with you about his daily diet... and get that doctor to right a letter, or vouch for you in some way. I think the biggest thing is that you need a ringer that is also involved in the health care industry. For my father, all he has was his family... me, and my mom mostly because we are the older adults after him. And we were only slightly heard.
My father is at home now, and so now it's the family that is monitoring his eating. He's better, but not 100%. And if he ever goes to the hospital or care facility again, I have no idea what I'll do, except try to find a health care professional that will vouch for us.
I wish you luck and blessings, and hope that you are able to find a supportive health care professional to fight this horrible system. :(
on September 14, 2011
at 04:23 AM
I work at a Skilled Nursing Facility (on the admin side) and it is painful to see some of the typical practices. Diabetic or not you are all on the same diet, although diabetics are given a Cal CONCHO or calorie conscience diet. So they feed him the same stuff but less of it and then compensate by jacking your insulin. From my experience the facility is under so much liability and regulation to put your dad on anything other the standard food pyramid diet would be viewed as outside the scope of recommended practice and create a huge liability if something was to happen.
If he is at an ALF and not a SNF (it sounds like a SNF based on your description) then it is a completely different animal. ALF's are not under as much regulation and most ALF's I know are private pay, so you should have some influence over his food. If it is a ALF look around if there isn't a better one in town. If your dad is declining quickly then you may want to look at a SNF (even if not as paleo friendly) so that he can get 24 hour RN care as well as Physical and Occupational Therapy (if Kaiser ok's it.) Once at the SNF the Dietary manager or the Social Worker should ask food preferences. You can ask that they put wheat as an allergy on his food card.
Kaiser and SNF are another story all together. Once a patient is diagnosed with Dementia (especially Alzheimers) they generally take the attitude that the patient is in capable of benefiting from any kind of therapy as their ability to learn is impaired. This is BS as I have seen patients who were completely demented (and almost hospice) return to a pretty high function with good dose of PT, OT and ST (speech therapy.)
His decline now may just be a result of an infection or weakness brought on by the stress of the surgery. If you can get him strong and on therapy he may recover partially (no guarantee's.) Trauma usually causes inflammation in other area's to get worse but not to say that the patient can't recover. Good luck.
Two other side notes. There are high end SNF's that do not accept Medicaid patients that are for the more affluent, that allow for a private chef (O'conner Woods in Stockton CA for example) Also Parkinson's and Alzheimer's make me think that this may be Lewy body dementia as they are closely related (just a hunch and not that it really makes a difference. Lewy Body Dementia is actually a harder diagnosis to place in SNF's based on violent behavior associated with the disease.)
If I think of any other facts or tips I'll post them in the comments.
on September 14, 2011
at 04:13 AM
I am so sorry Marie. I have no real advice for you- both my brother and mother are nurses, and yet the doctors and nurses treated them the same way they treat you when my brother was in the hospital. The only person in our family who got any results at all was my sister in law who was very authoritative mamma-bear-ish, and loud when necessary. But she literally had to camp out next to his bed and tell the doctor that under no circumstances was he to perform some such procedure on him (I forget the procedure, but whatever it was had absolutely nothing to do with his condition and could have killed him) and things like that. If you can't camp out pretty much 24/7, then I have no advice.
Is this temporary? Until he recovers totally from the surgery? Or are they expecting to keep him because of what happened? If it's temporary, then it may be best to suffer through this for a little while until you can get him home and feed him right. If this is expected to be a permanent thing, I'd look into patient advocacy. The main organizations don't really get involved in this sort of thing, but I think there are a few. If you need me to, I can ask my mother and sister in law for suggestions.