This December marks Karen's mother's first anniversary of living at Whitney Manor. It's been a long journey, for her and for us, since January of 1997 when she first left her home in Hampton, Connecticut for life in a care facility, and there have been many adjustments along the way for us all. For those of you we haven't been in touch with over the last couple of years, here's a brief recap of our family's travels in search of appropriate care for Mom.
What a long, strange trip...
January 1997: It has become abundantly clear to Richard and me that my mother's needs are not being addressed in her home setting. After a difficult discussion with her husband Don, he agrees to take her to the Benevolent Association, a Christian Science care facility near Boston. At the B.A. Mom receives care consistent with her Christian Science beliefs for several months. However, in August the B.A. informs the family that we will need to make alternative arrangements for her care by mid-month, since they are unable to accommodate her after that time.
August 1997: Mom wants to live in the New Haven area so we can see her more often. There are no Christian Science facilities in Connecticut, and nursing homes won't take her without a medical referral. Following a suggestion by a state social worker we arrange for Mom to be transported by ambulance to Yale-New Haven Hospital where we meet her at the Emergency Room. She is hospitalized for medical evaluation while the hospital social worker looks for a nursing home for her. Tests show she is suffering from a form of dementia (similar to Alzheimer's) and has a life-threatening thyroid deficiency which has caused her legs to swell up like balloons from fluid retention. Walking is very difficult for her, even with the walker she has been using for some time.
She is also showing extreme arthritic degeneration in both hips, especially on the left where a fall some years previous resulted in a fracture that was never treated, and both knees show severe damage from several tumbles she took while living in Hampton. Mom agrees to receive the medical treatment she urgently needs and begins thyroid hormone replacement therapy, as well as pain medication, during her stay at the hospital. After three days at Yale-New Haven, a nursing home bed is found for her, and she is transferred to Clifton House.
Mom's new residence is only minutes away from where we live, and Richard and I are overjoyed as we finally seem to have found a living situation where she will be properly taken care of. She is getting physical therapy to help her walk, and for the first few weeks at Clifton House Mom seems to be improving, even though she's having trouble adjusting to her 3 roommates and a noisier atmosphere than what she was used to in the country. She is put on a medication to control anxiety and it seems to help. Her appetite, which has been practically nonexistent for years, improves a bit as her thyroid level is slowly becoming normalized. During our frequent visits we are able to take her out for rides in the car, which she really enjoys. She says she is happy to be back in her childhood home town of New Haven, which holds so many fond memories for her.
A Turn for the Worse
October 1997: After 5 weeks at Clifton House, Mom suddenly becomes very ill. Her temperature drops dangerously, she stops eating and falls into a semi-conscious state. On my insistence an ambulance is called and when the medics can't get her to respond they rush her to the ER, where she winds up in the Intensive Care Unit. Test after test day after day fail to show what's wrong with her as Richard and I maintain an anxious vigil by her bedside. In addition to an IV, a feeding tube is added to give her liquid nourishment.
On the third day, just as suddenly as she had fallen ill she wakes up and starts talking to us. She is moved to a small private room in the hospital, and more tests are run. Eventually a diagnosis emerges--long-term malnourishment, a urinary tract infection and a bad reaction to her anti-anxiety drug, complicated by not-yet normalized thyroid function. Her doctors at the hospital adjust her medications, substituting a safer psychiatric drug for the one that gave her trouble, and institute a feeding program. For a few weeks she can only tolerate liquids and lives on four flavors of Ensure taken through a straw. Halloween comes and goes in her hospital ward and Thanksgiving arrives to find us feeding her homemade soup, very grateful we still have Mom with us. Gradually she begins to eat solid food and to feed herself.
Meanwhile, we are searching for another nursing home for my mother. After several arguments with the hospital social worker, who wants to return her to Clifton House, we win her agreement to place Mom in a new nursing home within the local area. Vacant beds are hard to come by, with waiting lists (some years long!) at most of the nursing homes we contact. Working with Don and a caseworker at the state Dept. of Social Services, we also start the "spend-down" process the state requires before someone in Mom's situation can receive Medicaid to pay for nursing home care. While we wade through the complicated bureacratic tangle of red tape, the days are ticking by and Mom's condition is improving. She is declared ready to be discharged by her doctors but still no nursing home will take her.
The Best Christmas Present
December 1997: Eight weeks into Mom's hospital stay, we are preparing to spend Christmas with her in the hospital when I get a call from a nursing home we had contacted about a bed for her. They have an unexpected vacancy, and Mom has finally been certified for Medicaid, so it looks like we're going to get the Christmas present we want the most. A last-minute hitch delays her departure from the hospital, but on December 9 Mom arrives at Whitney Manor, her new--and , we hope, this time permanent--home.
A Year at Whitney Manor
1998 has been full of ups and downs for Mom, but life at Whitney Manor has given her, in addition to the daily care she needs, stability, continuity, and new friendships. Her large, cheery room, shared with one other lady, looks out on a stand of trees with a view of the changing seasons and a picturesque wishing well. Photos of family and friends adorn a bulletin board over her dresser, which holds more photos and knick-knacks from her old home. Thanks to the efforts of Whitney Manor's wonderful social worker, Ellen, Mom now has a comfortable recliner upholstered in a beautiful blue velveteen.
The Queen with her Entourage
Ensconced in her chair, she spends most of her days holding court. New friends like Florence, who mothers her, and Ruth, who commiserates with her about aches and pains, drive their "cars" (wheelchairs) down the "street" (the main hallway) to her doorstep and stop in for a visit just about every day. Several of her church friends have made the trip to visit her, and she often receives mail and phone calls from long-distance friends and family. I call her every morning for a long chat, and Richard and I alternate frequent visits and participate in her quarterly care-assessment meetings.
Staff, too, are in and out of Mom's room constantly. The nurses, aides, and physical therapists are all terrific, and the maintenance workers always show her great kindness. Raoul, the janitor--a native of Mexico--shares Mom's love of his countryman Placido Domingo's music, and she enjoys playing her Domingo CDs for him while he cleans her room. Eddie, who serves the meals, brings Mom extra orange juice whenever he can because he knows she loves it.
Since Mom doesn't much care for the daily recreational activities, the recreation director stops in to see Mom every day and spends time with her in her room talking about things Mom enjoys discussing. Her short-term memory is not good but she can often remember the most amazing things! Richard and I feel blessed to have found a facility which provides excellent medical care along with a genuine spirit of caring.
Health Care Challenges
Largely as a result, we suspect, of the consistent and professional care she is now receiving at Whitney Manor, Mom's health has generally stabilized over the past year. Her memory hasn't deteriorated further and some days seems to be a bit improved. Her thyroid function has been normalized for over a year now and she is on a new medication to help with her rapid mood swings (a common complication of dementia) and another for her edema.
In July, Mom was diagnosed with chronic cellulitis, a deep-tissue infection related to poor circulation that can be life-threatening if not treated promptly with strong antibiotics. Her GP, the medical director at Whitney Manor, didn't recognize the cellulitis and was treating her symptoms as a dermatological problem, but since I have two friends with the condition I was able to alert the staff. Mom was referred to a vascular specialist who promptly put her on antibiotics. In November she had a flareup and went on the antibiotics again, but she wouldn't keep her legs elevated at night (she decided she would sleep in her chair rather than in bed because she hates having to be hoisted into bed by the aides) and the cellulitis came back shortly after she went off the medication. As I write this Mom is back on antibiotics.
Feeding my mother continues to present a challenge to the nutritional staff. Institutional cooking is certainly not up to the gourmet standard she had for her own cooking, but the food at Whitney Manor is more than palatable. Unfortunately, Mom seems to not recognize many of the foods she used to like when they are presented to her at mealtimes there, and she would rather go hungry than eat something she thinks she doesn't like. Because she has a history of malnutrition the staff monitors her protein levels carefully and has resorted to giving her supplemental protein shakes (Mom calls it "the chocolate diet") with her pills several times a day. They have also discovered that she likes yogurt (something she always used to hate!), so she gets it with almost every meal, and if she eats nothing else, she will have the yogurt along with her milk and juice.
Pain management also remains a challenge. Mom had a CAT scan done last spring by an orthopedist which showed that, in addition to both her hips and knees being shot, severe disk-related problems in her back. All of this adds up to chronic pain for her. I've been active in advocating pain control with Mom's medical team and she is now on Darvoset every 4 hours, but she still has pain. Her situation is complicated by the fact that most drugs stronger than what she takes cause dizziness or sleepiness, putting Mom more at risk of falling, so they are loathe to prescribe them. It's an ongoing problem that we are still working on.
Mom joins us in wishing you all a Happy Holiday season and everything good in the New Year!
