The Alzheimer's Nursing Home Decision For a Loved One!
- Published on Friday, 27 March 2009 01:08
- Written by Stanton O. Berg
If one were to describe the decision to place a loved one in a nursing home as a “World Changing Event”, would that sound melodramatic to you? If you are an outsider looking in, then perhaps it would sound melodramatic. However, if you are a care giver with a loved one involved as the subject for nursing home placement, then it is not.. If that loved one is also a spouse who is deeply loved and has been an intimate part of most of your life, then it truly is a “world and life changing event” in your world! Your world and the life of both will be dramatically changed forever by such a decision. It may seem as if one has arrived at a cross roads of hopelessness, frustration and despair with no other options. The tunnel without a light at the end. It will be an event that may well be debated in the mind and conscience of the care giver long after the decision has been made and perhaps for the remainder of the care givers lifetime. It will be a source of guilt no matter how well thought out or how well justified the decision may seem at the time. It is an agonizing event with continuing emotional fallout..
Angela Lund, the Education Outreach Coordinator of Mayo Clinic describes this event as:
"Transitions and uncertainty become the new normal for the Alzheimer's caregiver. But perhaps no transition is as monumental as when the person you love and have shared a life and home with moves to a care facility. The decision marks an irrefutable passage of a chapter in time." (1 October 2013)
(Photo lower right - June in February 1998, a month after Alzheimer's Diagnosis)
For me, such a decision in regard to my wife June continues to come up for review in my mind and conscience almost daily. It is particularly poignant during the anniversary week and day (March 16th, 2005) of such decision and placement .Ironically the day June entered the nursing facility was the same day of the month (16th) as our anniversary.
I keep thinking of how in the early days of our marriage, June would (whenever nursing homes came up for discussion) jokingly say: “They will have to carry me kicking and screaming if they ever want to put me in a nursing home!”
Then I remember that sad day in January 1998 when June and I were advised by her doctor that she was probably in early stages of Alzheimer’s. I remember her saying sadly...”I’ll probably have to be in a nursing home someday!”
Every time the matter comes up for review in my mind, these two statements also echo in the background.
So why am I making a record of all of these matters. Perhaps it is to convince myself that I did the right thing, perhaps it is a form of therapy or perhaps it is to tell other spouse caregivers who are going through similar mental debates of sadness that they are not alone. Most importantly however, it is to put the true face on Alzheimer’s as a terrible disease with a scope and breadth far beyond a simple memory loss.
(Photo lower right - June - December 2002 - 6th year Alzheimer's - our 50th anniversary year)
The critical week was the week of March 10th thru the 16th, 2005. This was the week of planning and completing June’s move from her home at 6025 Gardena Lane to an Alzheimer’s care facility, The Wellstead of Rogers at Rogers, Minnesota.
June was having an increasing difficult time with Alzheimer’s. June was at that time having periodic hallucinations. She thought at times that our home did not belong to us and belonged to “the girls.” She was afraid that “the girls” were coming back to harm us. I did not know who “the girls” were but I recalled one evening she was staring at a plate collection mounted on our bedroom wall. Each plate had a painting of a female and almost human appearing “doll”. It was my feeling that this was the source of “the girls”. I removed the plates but this idea remained with June for some time. One evening she was so afraid that in the middle of the night I found her hiding behind a chair in the living room. There were times that she failed to recognize me and at times would order me out of the house. One time in her frustration she ran away to a neighbor’s home in the middle of winter without a coat on. At times it was necessary to have our nearby son Dan and his wife Diane come over in the middle of the night to help calm June. Two of our grandchildren, Steven and Gretchen would frequently volunteer to stay overnight with us to provide comfort to June that I could not do as a perceived “stranger”. Our daughter Julie also would spend the night with June when needed. Erik, one of the grandchildren would take June out with him for an afternoon of activities. Our son Dave volunteered to be on call two nights a week if needed.
When I look back at my records of June and her care I note a typical email that I sent to our children on 20 February 2005. “It has been 10 days now since Mom started having her hallucinations. Mom’s days consist of: Periods of sadness and crying...Periods of hallucinations...periods of apparent anger at me...with periods of good humor, consideration and kindness...company seems to brighten her up....my days as a result are tense and heart rending. ..Sunday the following was noted: Mom was confused and crying and saying “I don’t know what to do”. I tried to console her. She asked me to sit on the living room couch next to her which I did. We held hands for a half hour after which she seemed to get over the crying and sadness. Later she told me to go into the kitchen and sit down because “the girls” were coming. (The evil sprits - "the girls" that supposedly own the house and everything in it.) After playing the Clavinova for a while she announced that it belonged to "the girls". She could not be convinced that I had purchased it for her. She started to get angry and I dropped the subject. Later while preparing to warm up a hot dish for supper, I was removing some pots and pans from the top oven. In a loud voice June told me that the pots and pans were not mine but that they belonged to "the girls". Later she asked me how long I was staying. When I said all evening she seemed disgusted and irritated.”
June’s situation became one in which there was almost a daily need to have help in the evening from the children and or grandchildren. At this point it appeared that June’s care in an Alzheimer’s facility would be the best approach to June’s proper long term care. June was now deep into the shadows of Alzheimer’s. She had completed 8 years since her diagnosis and was starting into her 9th year. A week of in home daytime care assistance on a trial basis did not appear to be working. (Home Instead Senior Care) She was suspicious of the “In Home Care Giver’s” and would frequently come to me and whisper in my ear about what they were doing.
Our son Dan took me to a facility that he had heard of and had already inspected in Rogers, MN so that I could see it and render my own judgment and opinion about it. (The Wellstead of Rogers.) When I saw it, the physical appearance and layout was far better then I had expected. The private rooms were similar to a small “L” shaped hotel room. The resident activity areas were attractive, roomy and well lighted. I signed the initial agreement papers and made a down payment on my first visit.
An RN from the Wellstead staff visited June in our home shortly after in order to make an assessment of her needs and requirements for care.
As we approached the day for June to go to the Alzheimer’s facility, I came to the realization that I would never be able to take June and leave her there. After over 50 years together, how could I do such a thing? Dan and Diane kindly volunteered to move June to the Wellstead as a “love gift.” I am indebted to them for assuming this terrible undertaking.
Our daughter Susan in Cary North Carolina could only watch and listen from afar. Her emails tell the story...
Susan's first email of 11 March 2005 reads:
“My prayers are that God will surround Mom with angels, that she will never be afraid and always feel the love that we all have for her.”
On 14 March 2005 her email reads:
"I hate the fact I cannot be there. Certainly my heart will be.”
(Photo on right is Susan and June - 2001 - 5th year Alzheimer's)
On 15 March 2005 Susan wrote:
"I believe that it will be by the grace of God that we all get through this. My prayers are that He will give us the strength that we need for tomorrow and the days to come. Tomorrow is going to be a tough one for our family."
Susan then related a touching story of her close knit neighborhood:
"I am comforted to find that they are all praying for you. Many are of different denominations, but all Christians and several different churches and choirs in this North Carolina town are in prayer for you and Mom."
(Photo below right - Champps Restaurant on the evening of 15 March 2005. L-R Khim Berg, Dave Berg, June Berg and Stan. Berg. This was June's last night out with family before going into the Alzheimer's facility the next day)
The “Activity Log” of the Home Instead Senior Care Home Helper (Kathleen) on March 16th, 2005 (7:00 AM to 9:30 AM) reads: “Helped June with her shower this AM. She was happy to see me then the sadness returns. She cries often. Doesn’t like to take her AM pills. Her grandson spent the night. I left early to give them family time. Breakfast: English muffin, peaches and cream oatmeal and orange Juice.”
Late in the day on Wednesday the 16th of March 2005 I sent the following email to our children and grandchildren telling them of June’s departure to the Wellstead of Rogers. “This morning at 10:00 AM, Dan and Diane picked up Mom to go to the Wellstead of Rogers...As I watched them drive away it seemed like a part of my life drained away with them. Surely the light of my life had left our home."
"Our grandson Steven was sitting with me at the kitchen window as we watched through tear filled eyes, the unfolding of June’s departure."
"God did give me a gift. I have been very mad at God but he did answer my last prayer. I asked him for a peaceful 24 hours before Mom’s departure. It was a nice 24 hours. Mom did not fall into one of the Alzheimer’s angry and cruel moods where I would be the enemy. Instead I was once again her friend. Earlier this morning Mom had one of her normal morning sad periods where she cried and looked so unhappy. I would as usual hug her and tell her everything would be all right. This morning for the hour before Dan and Diane’s arrival, Mom and I sat on the couch and held hands and I told her how much I loved her and that I would always love her and that she was the light of my life. She slept briefly with her head on my shoulder. She played the Clavinova for the last few minutes before Dan and Diane’s arrival.
(Photo lower right is June and our daughter Julie in 2001 - 5th year Alzheimer's)
Her departure was peaceable. She was told that Dr. Stein wanted her to see a place to help her. Steven stayed over night with us last night and was very helpful as he always is. Gretchen also spent much of her day yesterday with us as she has done so much in the past.
Last night Dave and Khim came and took us to Champps for dinner. Khim gave Mom a foot and leg massage afterwards that relaxed her for bed.**
Julie came over and put Mom to bed as she has done every night this week. I worry so much about how her evenings will be the first few days. I worry that she will be afraid at night in a strange place alone. Please give her your prayers.”
Julie had packed a bag of June's clothing and toilet articles the day before. These were left in the garage overnight for Dan and Diane to transfer to their car when they arrived in the morning.
June did not know that when she left home, she would not be returning.
Our son Dave does not normally cry but that evening as he was assisting Khim massage June’s feet and legs, he was wiping away the tears knowing it was his Mom’s last night at home.
(Photo lower right - June and granddaughter Gretchen - Champps Restaurant - last evening -15 March 2005)
There continued much mental pain and suffering by the family and for June as she struggled with accepting the Wellstead of Rogers, a strange place, as her new residence. The Wellstead had requested no visitors or contact for June during the first week until she became adjusted to her new surroundings (In hindsight, I question the wisdom of this procedure after seeing the absence of such a procedure in other similar facilities.)
Our son Dan was depressed on the day following June’s move to the Wellstead. He was concerned that she would always somehow remember that he was the one to leave or abandon her at the Wellstead.
June’s unhappiness with her situation at the Wellstead was devastating to me and I found myself calling the Wellstead one night (3/18/2005) at 3:00 AM to check on her. My email to the children and grandchildren reads: “I was told that Mom was sleeping on a recliner, that she was very tired and had been up all the night before. She paced a lot the night before and spent time waiting at the main door. One time she walked up to the nurse’s desk and demanded to be let out. When she would be tucked into bed she would soon be up again in a few minutes. A later call at 9:00 AM I was advised that Mom had a good nights sleep and that they were able to get her into her own bed. She had a good breakfast and was smiling and interacting with other residents which they said was a good sign.”
Our granddaughter Gretchen now tells me of her heartache and anguish at the time....”That was a very sad time for our family. I felt so helpless. I remember wanting to kidnap Grandma from the Wellstead and take care of her myself. I am glad I didn’t make such a foolish mistake. I really thought I could take care of her. I had called the Wellstead to find out how she was doing after her first day there. (Gretchen was unaware of the no contact rule.) They put Gram on the phone and she told me how she wanted to go home. That’s when I had my foolish thought. Taking care of someone in Grandma’s condition is a full time job requiring more than one person.”
Gretchen also reported to me at the time how June said to her: "Grandpa is not here." This guilt statement and indictment will be forever in my mind. Those feelings were further reinforced when I first saw June after the week acclimation period had passed. June seemed so happy to see me and exclaimed: "How did you ever find me?" She thought that I had been out searching for her until I found her, while in reality I was a part of the conspiracy.
(I can understand Gretchen's frustration, sadness and the desire to rescue her beloved Grandma. I can remember times that while watching June's sadness and crying periods at the Wellstead , and in my resulting despair I would have liked to have been able to whisk June away to another and happier world. I never found a road map to get there.)
The Senior Pastor of the Redeemer Lutheran Church (Our family church) Dave Glesne wrote on 16 March 2005
“My heart goes out to you.
I am thinking of the Psalms of Lament...
which gives voice to the cry of our hearts in times of depression and despair and trouble.
I am praying for an extra portion of God’s comfort and strength for you.
Pastor Dave. "
Pastor Glesne's wife Mona Glesne also sent a message on 16 March 2005:
"I will be praying for you as you go through this transitional time also.
I can't imagine the pain that must be in your heart.
May the Lord give you His Peace that passes all of our understanding.
(Photo below right - June K. Berg - The Wellstead - November 2005 - 8 months after arrival. June has a faded look. The once million dollar smile is now only a memory)
The second guessing and debating of the decision to place June in an Alzheimer’s facility started soon after the event and continues in endless cycles. It is always accompanied by feelings of guilt. I have always felt that I was a part of a conspiracy. Reassurances by friends and family are appreciated but the debate goes on. While our home (6025 Gardena Lane) is not a place of elegance, it is a nice home in a nice location and June loved the home. At the time she left the home, we had lived there together for almost 40 years. It was our third home but it was the first one in which we had purchased the lot, participated in the design and watched it being built. Many happy family get together's took place in this home including Thanksgiving and Christmas dinners and celebrations. Almost every time June and I would back the car out of the driveway, June would say: “we have such a nice home.” Now as I back my car alone out of the driveway I am haunted by her words.
See the related article on June’s Website. It is located on the center black navigation strip under the label of “Care Practices.” Click on:
Shaun Hallam - Newark Upon Trent, Nottingham United Kingdom - (18 January 2016): "That was such a hard read Stanton through teary eyes and I told myself I won't ever put my wife Annie into care home but caring for her has become harder. She won't stand up or walk and if I lift her she'll force her self to the floor. I think the amount of falls she has had due to her body suddenly jerking has scared her to the point of giving up trying. Can't get her upstairs to bed so had to put single bed in living room. But two things you wrote about jumped out at me....June saying I don't know what to do...my wife says the same and I first noticed it when she'd sing some song saying I don't know what to do. Secondly she's crying and getting angry a lot,then she'll be happier for a time then back to sadness and crying. You'd also think there was someone else about who only she can see as she's always chatting or arguing away seemingly on her own...sorry for carrying on but this definitely struck me just how sad and traumatic it is on everyone...one thing for sure though and that's no one could of done more for their wife than you Stanton."
Melissa Vaughan - Newburgh, Indiana - (18 January 2016): "I think it is the hardest decision to make, I promised my dad when he was dying of cancer I would take care of my mother, when she was diagnosed with Alzheimer's, we had long talks and she asked me to keep her at home for as long as I could...with my MS, I know God stepped in, I believe in miracles, because she got to stay at home with us till the end, it was hard, 8 very hard years, but also wonderful years, I even slept with her, Alzheimer's is different with every family...I had no help except my partner Mike, until Hospices the last 3 months....I would do it all again... The main concern is for the patient, to keep them safe, and give them dignity, my mom was the love of my life, she was magical, and she had never asked me for anything in her life."
Judy Lemon Spooner - Oliveira do Hospital, Portugal - (19 January 2016): "It is the hardest decision to make - but the right one. My mum, too, was determined that the only way she would leave her house was "feet first" but events overtook her and she had to be hospitalized for several weeks after contracting an infection. To cut a long story short, the hospital refused to allow her to return home without a FULL care package in place - which for my mum, meant 24 hour care, far too expensive an option. It made sense then, when she had already been absent from her own home, to get her settled into a good residential care home. She never once asked about her old house and she still says, occasionally, "I need to go into a nursing home, don't I".... not realizing that she is already in one! She is not particularly happy, but then she stopped being "happy" while in her own home. Bloody disease!!! (excuse the language)."
Louann Tomassi-Heydt - Big Piney, Wyoming - (20 January 2016): "As I read your story of June's transition out of her home it brought so many memories of our transition with Mom. It took me a long time to accept it was what needed to be done and then that day is so vivid in my mind. It seriously was the worst day of my life. We lived 200 miles away from the Alzheimer facility we choose for her. I traveled each week and tried to stay on a weekend a month for 4 years. I was in daily contact with the facility. The day we took her she had a death grip on my brothers hand. I wasn't sure we could even do it. Finally we were able to leave. That night she fell from meds they had given her and the next day I down there again fighting the urge to bring her home. It all eventually worked out for her best after a period of time but it was something I was never prepared to do. I am not sure a person can ever be prepared for this. I just wish we could of had her closer to home."
June first noticed a problem with her short term memory during 1997. Short term memory loss is a hallmark first symptom of Alzheimer's. In January of 1998, June was diagnosed by the University of Minnesota as being in the early stages of Alzheimer's. June's long journey into the shadows of this terrible disease ended after almost 12 years when she passed away on 23 October 2008 from Aspiration Pneumonia, a common complication of Alzheimer's. June's funeral notice as published in the Minneapolis Star in October 2008 can be seen on this website under the "In Memoriam" label - or simply Click on this link:
For the story of June’s favorite home at 6025 Gardena Lane and the poem I wrote about this home during a day of deep sadness, click on the below link: (This was June’s home for almost 40 years. It was constructed shortly after the previous home was severely damaged in a tornado. 6025 Gardena Lane was the first home the June participated in the selection and purchase of a lot on a small hill, helped with the design of the home and watched it being constructed. 6025 Gardena Lane had a special place in her heart.)