Saturday, April 26, 2008

Caring for Aunt Ann

Michelle and I have known each other for several years, but during Advent we were both on the same communion team and chatted a bit while waiting for others to arrive. She told me about her aunt, and the frustration she was experiencing with nursing home staff. I asked her if she'd like to be my guest blogger, and she agreed. In the few months since we talked, her aunt died.
    My aunt died January 4 after her last urinary tract infection led to the kidney failure, to hospital treatment, to hospice and three weeks waiting for her wish to be fulfilled - to join her family in heaven.

    For the past five years, I had to be a strong advocate for her, fighting for what I consider good treatment. You need to understand, Ann was in a "good" nursing home. But she and many other patients who could not get about by themselves, were wheeled to their rooms and left there without an attempt to give them their push cords to call for assistance. Staff or volunteers would wheel a cart by and put ice and water in their pitchers. That was good, but many couldn't lift the pitcher after it was filled. I never saw anyone put any water in a cup that the resident could take by himself/herself. I asked several to do it and, while they didn't say, "That's not my job," I never saw them do it in other rooms where they were filling pitchers. Often the pitchers were on the tables and way out of reach of the residents. (Lack of water increases potential for urinary tract infections and kidney failure with change in mental status.)

    When busy, staff would put Ann on the toilet where she could sit for more than a half hour at times. Ann would sit there scratching previously inaccessible areas but the staff would haul them off the toilet, wipe their bottoms, restore them to their wheelchairs and bring back out into the room. I would protest that Ann's hands needed washed, and they said "We wiped her." I explained about her scratching and showed them her fingernails and the dead skin, etc., under them. Staff would wheel her back in bathroom and help her wash. That gradually became wheeling her to the sink and leaving her there to care for someone else -- but Ann couldn't reach the faucet or handles from her wheelchair.

    I discovered that oral care (tooth brushing) was asking "Do you want to brush your teeth?" (not asked nightly) at the end of the day. So longing for their beds, the elderly would say "no." Weeks would go by that no toothbrush would be used. I tested once by bringing in my own toothbrush to use on Ann and winding a couple of Ann's hairs in the tooth brush. After two weeks unchanged, I reported it to the director and head nurse.

    I went on rampage after rampage in the winter when the heat was up and I would walk through the halls, stopping in various rooms where I had made friends and offering water. No one refused and no one drank less than 6 ounces of water. Most drank at least 12 ounces. When I told the facility I had offered to find a new place for Ann to live but she told me "No, I have friends here. And the other place will be the same or worse" - it got the director out of her office daily to walk the halls and survey who didn't have their call cords in their hands, offering water to patients, checking to see if water was available for those who couldn't pour. She did this for nearly two months during the heating season -- and guess what?? People were healthier when appropriately hydrated, were less listless and more interactive per my observations However, when the director stopped her daily walks, things went back to the way they were before.

    Ann had numerous urinary tract infections (UTI) over the years, sometimes two or three in a row before they were conquered. She also contracted an MRSA (methacillin-resistant Staphylococcus aureus) infection and had to be moved from her nursing home to a sister facility to share a room with someone else with MRSA. This is highly contagious and challenging to treat. However, with any infection and the elderly, using a new, powerful antibiotic is very hard on their systems, often resulting in yeast infections, stomach irritation and other side effects.

    Keep watch and an open ear to your loved one's condition -- seek to discover if they are feeling unwell while under antibiotic treatment. Good aides will notify the nurses. Good nurses will respond quickly to the aides comments about a change in condition (stomach upset, not wanting to eat, yeast discoloration, redness in genital area). Sorry to say, not all aides and nurses respond appropriately or quickly. If you are able and the resident is willing, ask to see the condition yourself.

    During those years, as I struggled to get attention for many of the nursing home residents and did some of the things they needed done on my own. I had a phone conversation with a doctor who cared for Ann there. He told me that my expectations for what the aides could provide in care was "unrealistic." (i.e., forget keeping their teeth clean, forget them getting body lotion immediately after a shower, offering water when they entered her room to serve her). He explained that during an eight hour shift, with the number of patients an aide had, the charting, showering, serving food, assisting in needs, it was his thought that I could not expect any more than 30 minutes of care per shift by an aide for my loved one. If I were lucky, or her need was more severe than other patients, perhaps 45 minutes. I was stunned into silence with that. But I did tell him, I would not be able to accept that what he was proposing was an acceptable level of care for any of the patients. And, you can probably guess that cantankerous and challenging patients that don't offer warm fuzzies with staff have a slightly decreased opportunity for his/her "number of minutes."

    Knowing the suffering that Ann had endured over 5-6 years (Ann still had her mental capacity to protect herself and demand certain care, but also hesitated to do too much in fear of making staff angry with her. Those with dementia may not always be able to seek appropriate care.

    While Ann wanted to "go home to the Lord" for some 10 years before her death, Ann was so amazingly happy to "be back home" after a hospital stay, it shocked me. She rejoiced in our visits, but did acknowledge that the times in between weren't so great for her, but I would watch her interact with staff, and the staff and Ann would each tell me their versions of stories when they shared fun and happiness together. I saw that interaction as being moments of quality that she appreciated. I found this contrasting with the desire to be done with her life on earth and sometimes challenging to reconcile.

    Hospice nurses have told me that pneumonia can be a gentle opportunity to escape from life. So, there is an option that can be written and added to health directives:
      1) that a patient who is debilitated can ask not to be treated for pneumonia.
      2) That should breathing difficulties and pneumonia symptoms appear, patient and family can request NO transfer to the hospital for treatment and implement hospice treatment (care centers or specialty hospice groups can provide that.)
      3) It is my understanding that the pneumonia process gradually lessens the patient's responsiveness and she succumbs to death reasonably easily.
      4) This peaceful death is with pain medication appropriate for condition.
      5) Ann might have been granted release from nursing home a few years earlier had she and I implemented this plan together. It's not an easy choice, but one that deserves conversation.
Thank you, Michelle--this is better than I could have hoped for, and I'm so thankful that Ann had a loving, Christian niece to help her through difficult times. In part 2, Michelle will share her experience with a 90 year old neighbor who needed emergency care.


Eleanor said...

Norma: My mother even in hospice care the last six weeks of her life had music, tv, art therapy, current events discussions, fresh flower arranging, religious events, hospice visitors, and lots and lots of family and friends visits and good food that she could swallow. She was in a wonderful Jewish facility in NJ. It made a difference. I saw her offered drinks and water and they brought it to her lips often. She also had them wipe her lips now and again too.

She had her nails done and painted as well as her hair cut up until the last week or two and having the ability to choose her own dress for the day were important things to her. Interestingly enough my mother always loved dolls. My brother and sister-in- law gave my mother a very life like baby doll for Mother's Day (she died in mid-June, 2007) and I would guess that there is not a single thing that gave her more comfort than holding that doll. I have it here now. It strangely gave me lots of comfort too at the end. Who can explain such things?

Care for my husband for the 11 months of hospice care was not as good, but good. It's the things that we don't think of such as the bathing, teeth brushing, etc. that can cause such a lessening in a person's esteem to say the least.

I signed up after his death for extended care insurance, but in my heart of heart know that if family and friends don't care, and act as monitors, my life may not be what I would want, and that is, of course, if I even get to that point.

Pain management is another thing too but things are changing. None of us know what our last days will be like when we are still hale and hearty.

mdoneil said...

As a nurse I know this is all to common, but not ubiquitous. At the nursing home my grandmother was in (Bon Secours in St. Petersburg, Florida) was wonderful. The staff was attentive and caring, and my grandmother always hydrated, bathed, and clean.

As a nurse I know what to look for, but even non-nurses know that if the place smells of urine, and the residents sit listless in the hallways it is not the best place in the world.

It is not a matter of funding, I know patients on medicare and medicaid who are in nice facilities, and I know private facilities I in which I would not want to place a family member.

Make a few visits at night or on the weekend if you can, see how the place is when administrators are there. That is more telling than anything else.

Also in Florida the inspection and violatin reports are required to filed with the local public library. Those are always illuminating.

joared said...

I've worked in many skilled nursing facilities and hospitals in So. Calif. Consistently, I've found the best ones are associated with retirement communities. If they have extra beds, in addition to the ones they need to have available for residents who might need to be admitted from a higher level of care, and a person can afford the extra cost (they usually don't accept Medicaid -- Medi-Cal here) they're worth checking into.

For any other facilities the suggestions by the nurse above are wise. Wherever the person is, frequent visits from friends, family who make an effort to track what is being done, or not done and then pursue follow-up can make a positive difference.

Recommend Dr. Nuland's book titled "How We Die."