So many of us hear about the difficulties of dementia and Alzheimer’s, not only for the person living through it, but also for those who love and care for the person with the disease. We can give you information on the disease, the suggested ways to handle situations and much more information. However, we thought it would be much more powerful to hear a first-hand account from a husband who is caring for his wife suffering from Alzheimer’s/dementia. George R., a friend of Shepherd’s Staff In-home Care has shared with us his most recent updates on his wife, Joan.
November 2018
Joan has become a lost soul, wandering only God knows where, searching…she sometimes speaks, but I cannot understand what she is saying…perhaps it is because I have hearing aids and/or I cannot fully comprehend what it is she is saying…or trying to say. She is oblivious to the time of day, the day of the week, the month of the year, and what year it is. Holidays? Just another day in the haze of many. The changes in season come and go, but they have no relevance.
The reality of Dementia/Alzheimer’s Disease is there is no remission, there is no stopping it, there is no slowing it down, there is no cure…and there are no survivors.
Nothing prepares you for this disease. No one is prepared for the isolation. Friends disappear because the person they knew is no longer there. The caregiver gets trapped with the patient. It is very lonely and isolating.
The disease is hiding her underneath, but there’s still a loved one in there who needs my love and attention.
Joan is leaving me, but not all at once, which would be painful enough, but in a wrenching succession of separations. One moment she is there, and then she is gone again, and each journey takes her a little farther from my reach. I cannot follow her, and I wonder where she goes when she leaves.
I wonder where she has gone? Why did she leave? She cannot tell me.
I watch her leaving, bit by bit, day by day, every day.
I believe that in her mind she is always with me; in my mind she is slipping away.
A myriad of experiences, forgotten skills, and confusing words…nothing; just gone.
Once she dressed herself carefully and beautifully and knew how to use a knife and a fork.
Then her dignity slipped away…it makes no difference now what she wears or how she looks or eats.
Once we slept together, at home, in our own queen size bed, snuggled close together.
Now she sleeps by day and I worry by night…her in a Safe Haven and me in a lonely house.
She used to go into town alone and enjoyed her independence, but one day she called…”I’m lost,” she cried and she was only a mile away from home on what used to be a familiar road.
We travelled each July back to Colorado, back to the Rocky Mountains and the cabin she so loved. Seeing dear friends from her teaching days and all those wonderful long time Front Range friends with whom she spent years of enjoyment. Now those fun times are gone; others are her friends now.
Many share her condition; others care for her now as I wish I could. When I visit her for lunch and supper, sometimes her face lights up, but words do not come. Her eyes ask how I am, but she does not understand the words I speak, so I just hold her. We sit together…words from me…smiles from her…sometimes.
Dementia/Alzheimer’s Disease is cruel…stealing her memories but leaving mine.
Daily I am the guardian of her memories.
There used to be light in her eyes; I miss that…terribly. Now there are tears in both our eyes.
She knows who I am. She knows that I am the one person who she loves, has always loved. No disease, no person can take that away.
While no one can change the outcome of Dementia or Alzheimer’s, with the right support you can change the journey.
I hope and pray I am doing that for her.
December 2018
For me, this Christmas Letter has been the most difficult to write to you. Essentially, I have been Joan’s caregiver since late in 2015 (surprised?). No one wishes to acknowledge that their spouse is mentally deteriorating – least of all me. Since our 16th wedding anniversary (15 August 2017), Joan has had to reside apart from me in a memory care community designed to fit the needs of residents with Alzheimer’s and other forms of dementia. She needed more than I could provide. This past year has been an emotional roller coaster for me as I watch Joan mentally disappear bit by bit. I have kept many of you informed and updated on Joan’s status, and I trust I have done a reasonably good job of it.
In one way, life for me in 2018 has been one of sameness, with one day blending into the next, and yet, the emotional impact on a daily basis is uniquely different, depending upon how I find Joan. For now, no treatment can prevent or halt the mental deterioration associated with Alzheimer’s disease. Joan has trouble expressing herself verbally and is unable to perform many normal everyday activities, such as dressing, bathing, using a knife or fork, or brushing her teeth. She also suffers from occasional delusions or hallucinations, some of which can be quite humorous.
On her good days, she is cheerful, smiling, communicative, on some level, and cooperative; on her not so good days, she can be a handful … I’ll just leave it at that. Joan sleeps a lot. When she is not sleeping, she may wander aimlessly, looking for something, someone…or become engrossed in a TV program. She can break out in song, give a spontaneous lecture, become irritated, or be very loving and appreciative for someone’s kindness, whether it be real or imaginary.
I visit Joan every day, twice a day (I have only missed once in 16 months) …11:00 – 1:00 for lunch and 4:00 – 6:00 for supper. My routine with her is basically the same: wake her up, brush her hair, use a warm washcloth to make her face and eyes feel better, give her a big hug and a kiss or two, collect her laundry to take home, check on her cookie stash and sundries, select her meal choice, take her to the dining room, help her to eat (some days she does most of it herself), and either take her to the common area for an activity or back to her apartment to relax, wherein she will usually fall asleep for a while. (Thank God she still likes to snuggle with me!).
Now, I can only share with you my feelings as this Christmas season unfolds and hope that you understand the “me” that is Joan’s husband, best friend and totally committed caregiver. I pray every day that tomorrow will come, and Joan will be smiling. It makes my heart sing when she is that way.
I have and willingly continue to help Joan through this. Every day I take her by the hand and walk with her as we explore this unfamiliar land in which we find ourselves. I promise to be as patient as she has been with me…but there seems to be an issue on which she and I would disagree. I have been with Joan for 18 years – long enough to know the best of her remains. It lies inside a loving heart and not within her brain. She has demonstrated this in so many subtle and sometimes verbal ways. So have no doubt: I will be there for her each and every day. I will help her all I can, for she’s the one who is not only the love OF my life; she is the love IN my life. I miss her at home sooo much!
I do not press her to remember or to make sense of where she is; I am happy just to hold her hand and stroke her soft face. I know she is struggling, and I try to understand her pain. I am there for her as days go by, and I am never far away. I temper my frustration and try hard to stem my tears. I try to share with her our memories and talk about familiar things. We still badly need each other. She is my Anam Cara. We are still a loving pair. My place is tight beside her … I always will be there for her.
Our home is as she left it … I feel comfortable with it … there is no need to change it.
There is a small lit Christmas tree in the front window … to me, it looks like an angel …
when I come home from seeing her in the evening, I look at the tree and say:
“I’m home, Joan”; when I go upstairs to bed, before I turn out that tree, I say “Good Night, Joan”…some traditions just should not change.
The light of the Christmas star to you,
The warmth of home and hearth to you,
The cheer and good will of friends to you,
The hope of a childlike heart to you,
The joy of a thousand angels to you,
The love of the Son,
And God’s peace to you.
February 2019
I believe the beginning of the end is coming for Joan.
Her pulmonary aspiration is getting worse. Aspiration pneumonia is a complication of pulmonary aspiration. Pulmonary aspiration is when you inhale food, stomach acid, or saliva into your lungs. You can also aspirate food that travels back up from your stomach to your esophagus. She is now being medicated for aspiration pneumonia…this may work in her favor; however, she is not eating, although she did eat most of her dinner that I fed her last night. Unfortunately, her aspiration was bad enough the RN had to suction a lot of saliva from the back of her throat so she would not choke and suffocate.
Joan has been in the hospital since Friday…her condition status is deteriorating. She was in good spirits while she was awake, though…Based upon a discussion I had with her attending physician this morning, he asked and I agreed to initiate a DNR order should Joan’s heart fail…right now her “motor” is doing quite well, but the aspiration could cause her to critically choke.
I have a meeting with a palliative care team tomorrow to brief Joan’s brother and myself. I want {her brother} to hear from them Joan’s current status and proposed plan of action…and to validate the decisions I will have to make if Joan’s condition worsens. I do not want to make these decisions alone without a family member present…it has been hard enough on me up to this point…I’ve had little support as it is (I am not complaining…it is what it is).
Obviously, the team will be made up of doctors, nurses, and other professional medical caregivers where she is receiving treatment. They will administer most of the ongoing comfort-care Joan receives when the decision is made that there is no coming back from the brink for Joan. While palliative care could be administered at the long-term care facility, it does not make much sense to move her back there given her current status.
I have tried my best to be a good caregiver to/for Joan … I pray that I have done all that I could.
God knows I love her so much …First, we would like to thank George for sharing his journey as he and Joan navigate this disease. We know that it is not an easy road traveled and they will both be in our prayers. If you are caring for a loved one suffering with Alzheimer’s/dementia, know that there is assistance available to you and your loved one. Programs and support are available through the Alzheimer’s Association and on-site respite care is available through companies like Shepherd’s Staff.
