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lollilove Asked July 2018

How much should I rely on the assisted living staff and doctor to assist with my mom's medical needs?

She has stage 4/5 vascular dementia with level 1 care at a facility. I requested recent blood work because it has been a long time since she had seen a doctor outside of the hospital and requested physical therapy to help her with strength. The facility's offsite rounding doctor ordered blood and it took me 3 weeks to get the results, which showed showed her to be anemic, (her upper body stays extremely cold even with the room being 78 degrees, main reason for my request), her cholesterol was very high, she's on blood pressure meds and had a stroke 1 year ago, which is why she's now in AL. Plus other areas were high which I have never been able to get an answer as to what those issues were. The only treatment for her by the doctor was placing her on a low-fat diet, but she picks her own meals daily and nothing has been put into place in regards to her diet.


I have also been trying to obtain a copy of her home health care plan from the medical director despite numerous requests, (she doesn't even have one) so I had no idea until I received an explanation of benefits that she was being seen by a nurse. She is on her 2nd month of treatments.


Should we be responsible for taking her to a doctor when needed for general health concerns/issues or is this something the medical staff should be overseeing if they have a local MD that rounds weekly for residents who choose to use him? I'm not sure what is normal. I just know I can't get responses to questions, medical concerns without much prompting and I have to initiate treatment for anything I know is not normal. Nothing is brought to my attention when some of her issues have been very noticeable but never addressed by any of the facility staff. Am I expecting too much for the staff at the facility be responsible and more communicative and proactive? I have not pushed or raised a stink yet but it's become extremely frustrating especially for the amount of money being paid and this facility came highly rated. She has been there for 90 days but so far everything else has been good!

Ahmijoy Jul 2018
You are within your rights to call a Care Conference at your mom’s facility. You are entitled to one every 3 months but you can call one at any time. Write down all the questions you have and take them into the conference. Request the presence of her nurse, aide, social worker and therapists. The Director of Nursing was present at some of my mom’s as was the dietician. Take notes on what they tell you and give them a few days to implement your requests. Then follow up. Don’t let up until you get satisfactory answers.

LaurenBond Jul 2018
All states have different regulations and laws for what services are required at skilled nursing care and assisted living. So, I can't speak directly to your situation. HOWEVER... this is how I see the situation.

Short answer - yes, you need to be involved and keep track of everything that matters. As others have said, advocate!

Long answer -

Assisted living was (theoretically) designed for people who need physical help but they can manage their own affairs. In reality, many people in assisted living cannot manage their own affairs, and the senior and the facility rely on family members for support. What if an older adult doesn't have a family member willing and able? They can hire an advocate or a geriatric care manager or a private case manager. People often don't think it's necessary but it really is....here's why:

Assisted living is very good at day-to-day, moment-to-moment needs, but not so good at the big picture. They can get your loved one to breakfast in the morning, but they may not be able to detect that she hasn't eaten more than 25% of her breakfast over the last two weeks, for example. This is partially a consequence of having shift workers, partially a consequence of an overloaded staff, partially a consequence of the priorities and education levels of the workers (no offense intended - they're doing what they're paid for - getting Mom out of bed and to the breakfast table reliably). Theoretically the nurse or the social worker should review records and pick this kind of thing up but rarely does this happen. It's not until it's an emergency does it get attention.

When our loved ones enter senior care facilities, we really want to believe that everything will be taken care of. The facility certainly doesn't want to point out that it relies on families - it might lose the sale! Once your loved one is a resident, then you come to learn this aspect of senior care facilities. Having an interested and active family member is required.

If they were to provide that level of service, it would raise the price which would also cause them to lose a sale. As a result, regulations are needed. Some states put in lots of regulations and then have to deal with and pay for enforcing them. Other states let the buyers beware.

As you can tell, I've thought a lot about this.

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Judysai422 Jul 2018
Lauren bond is spot on. Many of the responses refer to NH, but lollilove states her LO is in AL. They are not the same thing!
While convenient, medical staff at AL is not the same as having an off site doctor. Even then, it may be hard to get info from a doc unless they have a great staff.
Find a good geriatric MD for your LO and take them to appointments yourself. Have AL get orders from doctor. AL may prefer you use their doctor cuz it is easier for them, but this way you have an independent third party who is responsible to you!
Have doctor include orders for special diets and regular checks for BP, etc. Then AL has to follow up. However, be prepared that if your LO has needs that exceed what the AL can do, you may need to move them to Memory Care or NH.
Good luck to you. I am dealing with the same thing.

Janlin Jul 2018
Ahmijoy gave good advice. Answer is, you have to fight for your voice in the care of your Mom. I watched my Mom receive inferior care medically. There is an attitude toward Alzheimer’s care that defeats me! I kept my Mom home and later still, in home with hospice. Another example within weeks following my Mom’s passing was the loss of our Uncle. My Aunt kept saying to the caregivers and doctor at the facility that his cough recently sounded different, he’s not eating much or drinking and their response? “Hewas in dining room today” He had not! Within 2 days of this conversation he was rushed to the hospital near death. Severely dehydrated, pneumonia from possible aspiration and then he was gone. I had ultimate respect for the medical world until I had to navigate it. My knowledge is now, these are a bunch of burned out professionals that not having a cure to offer just placate and move on. Advocate, advocate and advocate some more. You are your Mom’s ONLY protector!!!

castlekathy Jul 2018
I agree - ADVOCATE! Request care conferences and hold the facility accountable. I now use the facility doctor mainly to get referrals to specialists - I had had enough of my Mom being their 'bread and butter' (direct quote from facility physician!). I have also called in the Ombudsman and the State when my concerns were not being addressed. Advocate!

Isthisrealyreal Jul 2018
High ratings don't mean much nowadays. If these come from a questionnaire filled out with staged questions to end in a high rating.

It is not unusual for a Nurse Practitioner to see AL residents for doctors visits.

From what you stated, I would be looking for a new facility while I found out what was going on and why is she not receiving the paid for care. I personally think there is so much fraud in these places. It's a, which one is least awful kinda situation, unfortunately.

drooney Jul 2018
Lollilove is mother in Assisted Living or Nursing Home? Thought it was AL. AL focus not medical . Different rules, level of care and staffing. Family still has larger role in resident medical care in AL. Although some AL say they will transport to appts, often this falls upon the family. Some AL now taking more medically complex residents than in their scope of care(or keeping resident who becomes more medically needy)

mumtothree Jul 2018
Might also depend on what state she lives in. Different states have different regulations for assisted living. In Alabama, they wouldn't help Mom with a band-aid, and my sister oversaw all of her medical care. In Massachusetts, honorable mother-in-law uses the rounding doctor, who is quite good, and who has referred her to outside specialists. He comes every other week, and his NP or PA comes on the off weeks, so someone is there weekly, if she needs a consult. On-site nursing staff handle her meds, which is included in their basic charge (in Alabama, med management was extra).
Size matters. Honorable M-I-L is in a smaller facility, where they notice if she doesn't show up for a meal, or if she's not demonstrating the "usual" pattern. I agree with the others, though, it helps that they know she has family nearby who want to be and are involved.

DeeAnna Jul 2018
Nursing Homes/Skilled Rehab facilities are regulated by the Federal government via Medicare and Medicaid while the Assisted Living facilities are regulated by the individual states.

Look under "Health and Human Services Department" for information regarding the State Regulations for Assisted Living for the state that your Mom lives in.

I have some websites that describe the services provided by Assisted Living facilities (Copy URL and Paste onto your browser.)

https://www.assistedlivingfacilities.org/resources/services-provided/

https://www.after55.com/blog/assisted-living-vs-nursing-homes/

https://www.caring.com/articles/how-assisted-living-facilities-determine-levels-of-care
Judysai422 Jul 2018
Great resources. Thank you.
meridianav Jul 2018
TO ALL IF YOU FEEL THAT YOUR LOVED ONE IS NOT GETTING GOOD CARE GET THEM OUT ASAP & FASTER DO NOT BE PUSHED OVER WITH THEM !!!!!!!!

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