My name is Christer. When my wife Marita was 55 years old, she was diagnosed with Alzheimer’s disease. For 20 years, we lived together with the illness, and I cared for her in our home through all its stages until her passing.When the diagnosis first arrived, I searched frantically online for answers, practical advice, and unique experiences from others in the same situation. I found very little back then. This website is created to be the resource and knowledge bank that I desperately lacked myself.Here, I have opened my personal diaries, notes, and emails—a total of 700 pages of raw materialcontaining uncensored reality, hardships, and love. My hope is that my experiences will offer you, as a fellow relative, comfort, guidance, and the strength to keep going.

📖 The Book ”Min fru, Marita” – A Life in Freedom, Not in Isolation

My book is about choosing life over illness. When Marita became sick, I refused to let her be isolated or hidden away. Marita loved going for car rides, so I bought a specially converted minibus where she could sit in her wheelchair right next to me in the front seat—just as she always had. It wasn’t about transportation; it was about a shared driving experience where we were equals.Despite her complete helplessness, we continued to explore the world together. We took long road trips to Denmark and Romania, and we flew to Thailand. When we were at home, we often walked in our beautiful Herrgårdsparken.The book is a handbook on how love and dignity can survive against all odds. It shows that a person with Alzheimer's has the right to experiences, participation, and adventure—all the way through.

Introduction to the letters from August 2009

The letters and quotes

Measuring my wife's life in childhood years – my personal reaction

”She is Afraid of Becoming a Burden to You” – Our Reality with Alzheimer’s

”I am so scared, I am so small” – Understanding the Language Behind Dementia

When my wife Marita was battling Alzheimer’s, she tried as best she could to put into words what was happening inside her. Something that has etched itself into my heart forever is when she said:”I am so scared, I am so small.”For Marita, this was the only way she could explain her total helplessness and her growing dependence. She felt her world shrinking and control slipping out of her hands.The Misunderstanding from the Outside World
Those who did not understand the nature of the illness would answer her logically: ”But no, Marita, you are not small. You are an adult.”But in Marita’s words lay a heavy, existential meaning. Meeting a person in that fear requires us to stop correcting what is factually wrong, and instead start validating the emotion that is entirely true. When she said she was small, she didn’t need a biological correction—she needed arms to hold her and assure her that she was safe.My Advice to Relatives and Healthcare Professionals:
When language begins to fail a person with Alzheimer’s, do not just listen to the words being spoken. Listen to the emotion behind them. When logic disappears, the emotions remain, and that is where we must meet them.

The Promise I Was Forced to Break – Why We Must Never Hide Alzheimer’s

When my wife Marita received her diagnosis at the age of 55, a great deal of shame was involved. It is a painful truth that many people feel ashamed of losing their cognitive abilities. Marita told me, with great seriousness, that I must not tell anyone about her illness.She had witnessed the priest in Bjästa driving his Alzheimer’s-stricken wife in a wheelchair, and that memory had etched itself into her mind. She looked at me and said:”If I get that sick, you must not show me to anyone.”Yet, that is exactly what I did. I broke that promise.

Choosing Life Over Shame
It was not an easy decision, and there were moments of doubt. But I refused to let shame win. I wanted Marita to live like everyone else, with her head held high, for as long as it was humanly possible. Hiding her away at home to protect her (and the outside world) from the reality of the illness felt like a greater betrayal than telling the truth.People with disabilities and dementia have the exact same right to occupy space in our society as anyone else. They should not be hidden behind closed doors because of the discomfort of others or their own fear of not being enough.

My Advice to Other Relatives:
You will be faced with impossible choices. But remember, it is not a betrayal to let your partner be seen. It is an act of pure love and respect to demand that society includes them fully, all the way to the end.

The Guilty Conscience – When Safety Feels Like an Intrusion of Privacy

Securing approval for personal assistance through LSS is a legal victory, but the emotional challenge that follows in daily life is monumental. Inviting outside individuals into your home to supervise and assist the person you love tears open deep wounds of guilt.

Between Hope and Anxiety in Daily Life
The summer of 2009 was a period of intense scheduling puzzles. Marita’s condition fluctuated. Some days it worked well for her to spend afternoons at the Bjästagården care facility until I finished work, but the illness made her brain incredibly sensitive to stimuli. Eventually, even environments she used to love became overwhelming, creating a deep restlessness and anxiety.

When our first assistant, Petra, was about to start in August 2009, we were met with Marita’s innocent but heartbreaking resistance:
”But surely Petra doesn't need to be here all the time,” she said.
Marita did not understand why she needed someone with her. She experienced it as if we were taking away her adult world.

The Hardest Day: Forcing an Intrusion on Independence
August 5, 2009, became one of the heaviest days of my life as a family caregiver. I went to work for a few hours, even though I was actually off, simply to force Marita to get used to having an assistant in the house. In my diary, I wrote in sheer desperation:
”I am trying to get Marita used to having a personal assistant at home. I am intruding on Marita's privacy and forcing a violation of her independence. I notice that Marita does not feel good when we don't believe she can manage on her own. It hurts very much.”

This is the hidden side of dementia for us relatives. Our duty is to keep those we love safe, but to make them safe, we are sometimes forced to strip away their last pieces of independence. Witnessing that your care causes pain to the other person is an existential grief that is heavy to bear.

My Advice to Others in the Same Struggle:
When you are forced to make decisions that your partner protests against, remember that you are not doing anything wrong. It is the illness forcing these choices. The guilty conscience is proof of how deeply you love and respect your partner, but you must allow yourself to protect them—even when they themselves do not understand that they need protection.

When the World Moves Too Fast – Meeting the Patient’s Awareness of Their Loss

In August 2009, when we had just introduced personal assistance in our home, we entered an emotionally very heavy phase. The illness took more and more of Marita's cognitive ability, but she was still partially aware of what she was losing. Being in that borderline territory creates immense existential stress for the person affected.

When the Surroundings Speak Too Fast

During this period, Marita began to express a deep fatigue and frustration with how the outside world communicated. She often said to me: ”Everyone speaks so fast, I don’t have time to understand what is happening.”

When the brain is damaged by Alzheimer's, the ability to sort and interpret impressions decreases. To Marita, it felt as if the world was racing away from her. This caused her emotions to swing violently. She could go from being deeply emotional, crying and hugging our Zandra, her mother at Bjästagården, to suddenly becoming angry and very firm with me.

As a relative, it is easy to take this anger personally, but in reality, it stems from sheer helplessness. Marita was angry at the illness and at her situation, not at me.

The Grief of No Longer Managing on One's Own

In my email exchange with our faithful assistant Petra, I wrote in pure self-reflection about how painful it must be for Marita:”I don’t know how sad and aware Marita is about not managing on her own anymore. But a feeling like that can make a person spiral mentally. To be dependent on others and to feel that no one believes she can manage by herself.”

Being forced to depend on other people to manage daily life cuts deeply into an adult’s dignity. It is a grief that we who stand beside them must treat with the utmost respect.

My Advice to Relatives and Assistants:

• Slow down the pace: When your loved one says that everyone is speaking too fast—speak more slowly, use short sentences, and give the person time to process the words. Eliminate background noises like the TV or radio.
• Acknowledge their awareness: If your partner shows anger or sadness about not managing on their own, do not try to brush it off with a cheerful ”but you are doing so well!”. Instead, validate the feeling: ”I understand that this feels incredibly tough and frustrating right now, but I am right here with you.”
• Look behind the anger: Remember that outbursts and mood swings are often the last language a frustrated brain has left to express: ”I am scared, and I am losing control.”

Not Just "Cared For" – The Fight for the Rights of Young-Onset Patients

When a person is diagnosed with Alzheimer’s disease in the middle of life, before the age of 65, they encounter a care system that is entirely designed for people in their 80s or 90s. The municipality's standard answer is often "daycare" at a local elderly center. But for a younger, physically active person, such an environment can feel like a direct violation of their dignity

Refusing to Be "Transported"

In the spring of 2010, the social services administration in Örnsköldsvik wanted to hold a meeting with my wife Marita to discuss daycare. As her husband and legal guardian, I was forced to step in and write a sharp letter to the administration to protect her from a system that did not understand her unique needs.We had already tried the municipality’s daycare at an early stage, and it failed completely for two very distinct reasons:

1. The Age Gap: The other participants were much older, which meant Marita found no natural companionship.
2. The Lack of Dignity: Marita refused to just be "transported" to a place to be passively taken care of.
   Marita wanted to live like a normal person, in motion, not just pass the time in a corridor. Having a discussion directly with her about these difficult questions, when the illness already made it hard for her to communicate her thoughts, would only make her deeply uncomfortable and stressed.

The Broken Chain of Care Competence

In my encounters with the authorities, I quickly realized how lonely you are as a relative of a younger patient. There was no functioning network in Örnsköldsvik, and the lifeline of knowledge and experience that the previous dementia team possessed had been dismantled by the municipality through reorganizations.To find support, I had to turn to a national network and meetings in Umeå organized by the Swedish Dementia Association for younger patients. There, I found the knowledge that my own municipality lacked.

The Small, Hidden Daily Behaviors

While I was fighting the administration, the invisible daily life continued at home with the assistants. The illness manifested in new, hard-to-understand behaviors. One example from our assistants' logbooks was Marita's fixation on the taps: she constantly turned the water back on as soon as the assistants tried to turn it off.It is these small, continuous situations that turn family caregiving into a 24-hour job—you must constantly find new "tricks and maneuvers" to tackle what is happening, without resorting to restrictions that hurt the loved one's independence.My Advice to Relatives in the Struggle with Authorities:

• Become your partner's voice: If the municipality suggests an intervention that you know will make your partner feel bad—demand an alternative. You know your partner best after a long marriage; the authorities only see a diagnosis on a piece of paper.
• Seek networks outside your municipality: If there is a lack of caregiver support for younger patients in your hometown, look to national dementia associations or specialized networks. Sharing experiences with others in the exact same unique situation is absolutely vital.

A Summer of Contrasts – Between Normal Life and Sudden Grief

The summer of 2010 carried a heavy duality. On one hand, there were moments of deep harmony and affection; on the other, we were met with sudden, inexplicable plunges into a bottomless existential sorrow. For a family caregiver, it is an emotional roller coaster that requires immense patience.

Recreating "The Good Old Life"
During the month of July, it was clearly noticeable how much better Marita felt with me being home more during the summer holidays. When I was close by, I could give her a greater sense of freedom. We managed at times to recreate pieces of our old, normal life, with spontaneous social gatherings, food, and coffee together with neighbors and relatives.

Although Marita talked a lot to herself and her world had become more confined, she showed an even greater affection toward me. When we were in our shared bubble, her reactions were calm and balanced. Thanks to the assistants arriving at 10:00 AM, we also got the time we needed to get ready in peace and quiet, which reduced morning stress dramatically.

The Flip Side of Excursions: When Impressions Become Too Heavy
But the illness constantly reminded us of its presence. Our assistants, Ingrid and Eva, took Marita on wonderful excursions, including to café LEVA and to the pier in Köpmanholmen, where they ate lunch and walked in the beautiful surroundings. Marita enjoyed herself and seemed happy during the trips themselves.

But the backlash came after returning home. On July 7, after a seemingly successful day in Köpmanholmen, Marita was hit by a sudden and deep depression. She became terribly sad and cried convulsively, on and off, for an entire hour.

This is a phenomenon that many relatives recognize but find hard to understand. For a damaged brain, an excursion—with all its new environments, faces, sounds, and impressions—demands an enormous amount of energy. When Marita came home to her safe environment, all the tension released, and the exhaustion turned into convulsive crying. There was nothing wrong with the excursion; the brain was simply completely exhausted.

The Silent Price of Medication
At the same time as we fought the emotional waves, we wrestled with the physical side effects of the medications. The drugs prescribed to suppress hallucinations and create balance led to severe weight gain for Marita. As a relative, you are constantly forced to weigh mental harmony against the physical impact on the body, in an ongoing dialogue with the geriatric department.

My Advice to Relatives and Caregivers:

• See the crying as a release: If your partner becomes deeply sad or angry after an excursion, it does not mean the day was bad. It is often a natural reaction to overstimulation. Meet the crying with total calmness, hold them close, and let the storm pass in a quiet, dark environment.
• Treasure the small moments: Take advantage of the moments of affection and harmony that arise. They are the fuel that gives you the strength to endure the heavy hours.
• Adjust the pace after a trip: Always plan a completely quiet day without any demands after you have been away on a larger excursion. The brain needs time to recover in its familiar safety.

When Panic Sets In – The Painful Thought of Alternative Care (Autumn 2010)

By the autumn of 2010, we reached a limit where providing 24-hour care for Marita began to take a severe toll on my own health. When the morning routines and showering—which had always worked perfectly before—suddenly locked up in stress, frustration, and anger, a creeping feeling finally arrived: panic.

The Importance of Wise and Sympathetic Support
During this difficult time, I had an invaluable email dialogue with our dementia nurse, Gun Gafvelin-Nilsson. Gun helped me understand the neuropsychiatric background behind Marita's behavior. She reminded me that when Marita can no longer comprehend a situation, her anxiety intensifies.

Gun's advice provided a sense of liberation from the rigid routines one easily locks oneself into as a caregiver: ”If you don't have a specific time to keep, perhaps it doesn't matter much if she hasn't showered... If she becomes stressed and irritated, you can wait.”

The Hardest Decision: What Is Her Innermost Will?
When Gun gently raised the question of whether it was time to start considering alternative care for Marita, I was forced to face my own deepest fears. It is a decision filled with almost unbearable sorrow. In my response to Gun, I described the existential breakdown:

”Of course, I think ahead about alternative care, but it is a difficult thought... To escape the emotional demands at home and perhaps not feel the same dullness. But such a decision is very difficult to make when you see that she still glimpses through sometimes. And what is her innermost will?”

The Hidden Legal Trap: LSS vs. The Social Services Act
In my search for answers, I also received invaluable guidance from Bodil, another family caregiver who was fighting her own battle in the Administrative Court. She informed me about a critical legal right that municipalities often "forget" to mention:

Since Marita was under the age of 65, she was legally entitled to an LSS-resident facility with high staff density (often 5 residents to 5 staff members) focusing on cultural activities and outdoor recreation—not a traditional dementia home under the Social Services Act (SoL).

The difference is monumental. According to the National Board of Health and Welfare, if a residential home is granted under LSS, the municipality cannot charge a home-care fee for the specialized accommodation. Municipalities often resist this and try to place young-onset dementia patients in cheaper SoL facilities, forcing relatives into heavy legal appeals in the Administrative Court to protect both their loved one's dignity and the family's finances.

The Battle Over Medication: "It Is Like Abuse"
Parallel to the legal anxiety, a dangerous medical crisis was unfolding at home. The sedative medication Heminevrin was not working, and the medical staff began prescribing heavy sedatives like Oxascand and Sobril instead.

The side effects were catastrophic. The medication made Marita so muscle-relaxed that she suffered repeated, handless falls. The personal assistants experienced situations that could have ended very badly. Finally, I had to put my foot down firmly against the healthcare providers. I contacted the doctors and told them straight out: Giving Marita this medication so that she falls handlessly is like pure abuse.

Following my sharp protest, the medical team backed down, the medication was discontinued, and Marita was instead prescribed Lyrica. This dampened her existential anxiety in a significantly gentler way without stripping away her physical balance.

My Advice to Caregivers in the Same Struggle:

• Do not accept just any accommodation: If your partner is under 65, demand an LSS-specific facility. Do not let the municipality place a young, physically active person in an understaffed elderly care home.
• Watch the medications closely: Do not blindly trust the doctors' prescriptions. If you notice that sedatives make your partner unsteady or lead to falls, demand an immediate change. You are your partner's ultimate safety net.
• Forgive yourself for the panic: The illness goes in waves; suddenly a day comes that is much worse. Feeling panic and anxiety is human. It is not a betrayal to recognize your limitations; it is a sign that you have carried the entire weight yourself for far too long.

The Choice Between Two Evils – The Logbook of Lyrica’s First Day (November 2010)

When the existential anxiety and hallucinations took a tight, convulsive grip on our daily life, our days turned into a chemical race against the clock. My email dialogue with dementia nurse Gun from early November 2010 exposes the brutal reality behind the medical decisions.A Day Inside the Mental Prison (November 1, 2010)
To provide an honest picture of how storm-ridden an Alzheimer’s brain can be, I am sharing my personal notes from the very day Marita debuted with the new medication, Lyrica:

• 05:00 AM Marita wakes up. Her anxiety intensifies at 05:15 AM when she asks for her sister, wondering where she is. I give her two Oxascand. It does not lead to a total breakdown, but by 06:05 AM she is sitting in the armchair, right back in her misery. She eats breakfast with great difficulty.
• 08:00 AM The anxiety returns. Assistant Alexandra tries taking her for a walk, but Marita becomes angry and tries to run away from her.
• 08:15 AM Another two Oxascand. Meanwhile, Marita is struck by severe panic anxiety that lasts for nearly an hour before she finally falls asleep from exhaustion.
• 02:00 PM Marita is woken up by a visitor, but once again requires two Oxascand as her restlessness increases.
• 05:00 PM The need for Oxascand strikes again as her anxiety escalates into hallucinations, leaving her terrified. I sit with her the entire time until the medication takes effect and she calms down.
• 07:30 PM I give her a sample pack of Lyrica, emptied into a yogurt. Afterward, she finally becomes calm, relaxed, and very tired. She falls asleep immediately at bedtime at 08:00 PM.

In the midst of this drowsiness and absence, I had a strong perception that Marita was fully aware of what I was talking about. This is the greatest tragedy of young-onset Alzheimer’s: to be unable to communicate or voice your objections. It is to find oneself inside a mental prison.The Dark Side of Healthcare: A Choice Between Two Evils
When I discussed this heavy day with Gun, she gave me a response that summarizes the entire medical helplessness of the situation:”We will see what effect Lyrica has, and sometimes you have to choose between two evils. If we see that it helps Marita, it is worth her being a bit tired from the medicine. There simply isn’t another choice in our current situation, as I see it!”This is the silent, painful price you are forced to pay as a family caregiver. You are forced to choose between watching your life partner suffer from agonizing panic attacks and terrifying hallucinations, or watching her be medicated into a tired and absent daze.

My Advice to Caregivers in the Medical Jungle:

• Keep meticulous logbooks: Write down exact times and the effects of medications, just as I did. This is your only concrete tool when evaluating care with the geriatric specialists. Doctors only see the patient for 15 minutes; you see the whole 24-hour cycle.
• Measure peace of mind, not just alertness: If a medication makes your partner tired but free from panic, it can be a form of compassionate mercy in the final stages. However, if the medication strips away their physical balance and causes handless falls (as Oxascand and Sobril did to Marita), you must put your foot down firmly.
• Speak to the person inside: Even when your partner seems absent or dazed by medications, always operate under the assumption that they understand everything you say. Keep holding their hand, tell them how much you love them, and reassure them that they are completely safe.

Light in the Darkness – A Strengthening Christmas Amidst the Illness (December 2010)

After the stormy autumn months of 2010, marked by severe panic attacks and constant medication changes, something wonderful happened in December. By finding the right balance with the medication Lyrica, and finally securing three exceptionally suitable personal assistants, the storm cleared for a while. The Christmas holidays of 2010 became a much-needed breathing space of pure joy and quality of life.

Traditions, Family Gatherings, and Holiday Cheer
My logbooks and emails to the family and to our dementia nurse, Gun, from the Christmas days carry immense gratitude:

• Christmas Eve Eve: We were invited for the traditional "dipping in the pot" (dopp i grytan) in Hörnett at Benjamin's home with his family. Marita was in a fantastic mood and joked happily. She truly enjoyed the evening, even though the grandchildren naturally found it a bit difficult to understand her way of expressing herself and looked quite puzzled.
• Christmas Eve: In the middle of the day, we had Christmas coffee in Hålviken at Katarina’s home with her family. Once back home, we worked together; I mopped the floors and prepared the Christmas dinner, and Marita decorated the Christmas tree—just as she so dearly wanted to do.
• Christmas Day: Both Katarina’s and Benjamin’s families came over to our house for Christmas coffee. Marita clearly appreciated that we prepared the house for the visitors, and it turned out to be a thoroughly pleasant time for all of us.

When the Constant "Ache of Anxiety" Finally Relents
For me as a family caregiver, these days brought an indescribable relief. Of course, the different phases of the illness came and went throughout the day, but it was a level that I felt I had control over and could manage. For the first time in a very long time, I could clean and tidy up during the holidays without feeling immensely stressed, and without carrying that constant, gnawing ache of anxiety in my chest the moment my attention wasn't directed straight at Marita. Having a functioning team of assistants around you is absolutely vital for a partner to be able to breathe.

The Unpredictable Nature of Alzheimer’s
When I wrote to Gun on December 26, I concluded with words that every dementia relative can relate to :”But you never know what Alzheimer’s can throw at you. It is unpredictable, but this past week has at least been strengthening.”That is exactly how you have to tackle this illness. You can never take tomorrow for granted. But when those bright spots and calm weeks do arrive, you must dare to absorb every single second of happiness to gather strength for the next storm.

My Advice to Caregivers for the Holidays:

• Adapt the excursions: Do as we did—keep family visits short and schedule them in the middle of the day, rather than staying for long, drawn-out evenings that exhaust a damaged brain.
• Let your partner participate: Allowing Marita to decorate the tree gave her a sense of purpose and belonging . Look for small, familiar holiday tasks that your partner can still appreciate and manage.
• Address the grandchildren's questions openly: It is completely natural for grandchildren to look puzzled when a grandparent expresses themselves differently. Speak openly with the children and explain that her brain is a bit sick, but that she is overjoyed to have them there . This removes the drama for the next generation.

”There is So Much Left” – Moments of Total Clarity Amidst the Illness (Autumn 2011)

As Alzheimer’s disease progresses, a person’s behavior changes dramatically. By the autumn of 2011, Marita's brain was seeking new ways to process reality, which sometimes manifested in her wandering around, rearranging things, or even crawling on the floor. To the outside world, this behavior might seem incomprehensible or alarming, but in the middle of this advanced stage, moments of sharp, beautiful human clarity were still hidden beneath the surface.A Heartbreaking Evening in Bed (September 1, 2011)
One evening, I sat down to talk with Marita about what our life together had been like. What happened next etched itself into my heart forever. Marita became visibly moved. She hugged me tightly, looked at me, and wept with a deep awareness of her own situation. She tried with her last fragments of speech to explain how incredibly difficult it was to live inside that mental prison at that moment.It was a painful yet extraordinary moment, because I suddenly realized how incredibly clear her thoughts actually were underneath it all. When we lay down to sleep, she was no longer sad. She looked at me and said calmly:”There is so much left.”Those words are the ultimate guiding light of my life. They prove that no matter how much of the outer behavior is dismantled by the illness, the person, the love, and the conscious mind remain inside. This is exactly why we must never hide away or stop communicating with an Alzheimer’s patient.The Hygiene Struggle and the Marte Meo Method
During this same period, we wrestled with the practical challenges of daily care. Our wonderful dementia nurse, Gun, highlighted in our emails how Marita’s inner restlessness made her angry and resistant during intimate hygiene and changes of incontinence care. Marita simply did not understand the situation, and when a human being cannot comprehend what is happening, they become frightened and protest.We found the solution in the Marte Meo method. Together with our personal assistants, we consciously focused on:

• A slow pace: Never rushing or forcing any task.
• Good face: Always meeting Marita with a warm, smiling, and reassuring facial expression.
• Body language and listening: Using touch, open gestures, and being entirely attentive to her signals instead of just performing a duty.

The Value of Caring Assistants
Despite the difficulties with her digestive issues, daily life functioned remarkably well at times, largely thanks to our personal assistant Alexandra. Alexandra took care of Marita during the weekends. She possessed a deeply compassionate, curious, and empathetic approach; she truly cared for Marita from the bottom of her heart—an affection that Marita completely reciprocated.During these weekends, Marita could sit quietly, deeply lost in thought, or wander to the front door now and then. However, her hallucinations were few, and she was mostly happy and calm. She could even speak up clearly when her stomach was upset and she didn't feel like using the restroom at that exact second, showing a resistance born out of a desire for autonomy.My Advice to Relatives and Caregivers:

• Look for what is left: Never assume that a person has stopped thinking or feeling just because their speech or logic is gone. Talk about your shared memories, hold each other close, and listen. Moments of total clarity can surface when you least expect them.
• Use the "Good Face": When hygiene or changing becomes a battle—step back. Meet the person at eye level with a slow pace and a warm expression. Softly explain what you are doing. When you change your approach, you change their sense of safety.
• See the behavior as a language: When a person crawls on the floor or wanders to the door, it is not a "bug" that must be stopped. It is the body's way of expressing restlessness or a search for security. Allow it to happen as long as it is safe, and meet that restlessness with a gentle embrace.

The Battle for Double Staffing – When the Illness Becomes Physically Overwhelming (Summer 2012)

When Alzheimer’s disease enters its later stages, the challenges are no longer just about cognitive loss, but about severe physical complications. By the summer of 2012, we reached a point where Marita's body began locking up in prolonged, severe flare-ups (skov). This fundamentally changed our care situation and forced a new, urgent battle against the authorities to secure the right to double staffing (having two assistants working simultaneously).

When the Body Becomes Rigid and Lopsided
During July 2012, Marita's physical status deteriorated drastically. She suffered from extreme rigidity, which meant she could no longer get out of bed or stand up on her own. During lifts, she became highly resistant and displayed deep fear—a natural reaction from a brain that can no longer comprehend gravity, balance, or bodily movements.

Once we managed to get her onto her feet, she was unable to stand independently. Her entire body became heavily lopsided, and the assistant or I had to hold her in a firm, steady grip just to prevent her from falling while slowly helping her move forward.

The Unsustainable Daily Life Ahead of returning to Work
During my summer leave from work, I was able to assist the personal assistant with the heavy lifting, showering, and morning hygiene. But expecting a single assistant to manage these heavy, demanding tasks once I returned to full-time work was a physical impossibility. There was also an immense safety risk that a single assistant would be unable to manage a sudden physical flare-up during a brief walk outdoors.

Our daily life urgently required double staffing. However, making the authorities understand the urgency of the situation is always a bureaucratic hurdle. The LSS case managers demanded evaluations from occupational therapists, newly conducted ADL (Activities of Daily Living) assessments, assistive device reviews, and past calculation records from the Social Insurance Agency (Försäkringskassan) before they would even consider making a decision.

In the midst of complete physical exhaustion, you, as a spouse and legal guardian, are forced to act as an administrator—hunting down old documents and coordinating bureaucratic alignment between the municipality and the state.

My Advice to Caregivers When Physical Lifting Becomes Too Heavy:

• Apply for double staffing early: Do not wait until you or the personal assistants injure your backs. The moment you notice your partner becoming rigid, lopsided, or unable to maintain balance during transfers, you must apply in writing for expanded care hours for dual staffing.
• Involve an occupational therapist immediately: The municipality will demand an official ADL assessment. Contact an occupational therapist right away to get a professional evaluation regarding your partner's actual needs during showering, dressing, and mobility. Authorities rarely trust a relative's word; they require official clinical documentation.
• Document the physical flare-ups: Keep a precise log of how often the body locks up and how your partner's fear and resistance manifest. This documentation is what proves the situation is a severe safety hazard for a single caregiver working alone.

Life in the Logbook – Teeth Grinding, Mobility Training, and Freedom in the Minibus (Spring 2014)

Having a well-functioning team of personal assistants is not just about managing physical transfers. It is about working together to document, understand, and alleviate the continuous changes happening in your loved one’s body and mind. Our logbook from April 2014 shows how our team—alongside assistants Alexandra, Erika, Anne, Stina, and Anneli—fought the symptoms but refused to let go of quality of life.Teeth Grinding – The Hidden Symptom of Inner Stress
During this period, Marita wrestled with intensive and periodically convulsive teeth grinding and clenching. For a person with advanced Alzheimer’s, this is often a physical expression of inner stress or a flare-up in the brain that they can no longer put into words. The jaw clenching could be incredibly severe, which meant I had to purchase new mouthguards quite frequently.We constantly tried new ways to alleviate this. Some days giving her chewing gum worked well to divert the chewing reflex, while on other days it was less effective.My Own Method with the Mouthguard
When the flare-ups hit in the evenings, it was vital to find solutions that Marita could accept. A standard mouthguard could not be pressed completely into her mouth—it did not fit her teeth, and she would never have tolerated it. Therefore, I developed my very own method:

• I placed the mouthguard so that Marita held half of the guard inside her mouth and the other half outside.
• This allowed her to bite down on it or hold it still. The material was perfect for providing resistance without being too hard.
• When I put the guard in during the evening to help her fall asleep peacefully, I held onto the part remaining outside her mouth and sat beside her, observing her the entire time. Once she fell fast asleep, she relaxed, and I could gently set the guard aside.

Mobility Training and Physical Limitations
Marita’s physical status fluctuated greatly. Some days she tended to lean heavily during meals, or wanted to sit down the moment she stood up on her feet. But we did not give up. In the evenings, Marita and I conducted regular mobility and walking training to keep her muscles active and stimulate the brain’s movement center. It required immense patience, but it was a vital part of preserving her physical dignity for as long as humanly possible.

The ”Jumpy” Minibus – Our Gateway to Freedom
In the midst of this daily battle, there was one medicine that never failed: getting out and into motion. Our specially adapted minibus, which we affectionately called the Jumpy, was our absolute lifeline.The logbook shows how Marita could be deeply tired and lethargic in the afternoon, but the moment we secured her wheelchair inside the Jumpy and rolled out for a trip to sit in the sun, or drove through Dal and the surrounding villages, she instantly brightened up. The nature, the coffee in the sunshine, and the outdoor scents gave her a harmonious evening. On April 14, she even woke up laughing out loud and was in an absolute top-tier mood.My Advice to Relatives and Assistant Teams:

• Never force assistive devices: If your partner does not accept a mouthguard or a medical tool, do not force it. Think outside the box, just as I did by leaving half the guard outside the mouth. Alleviation and comfort are what matter most, not following the user manual perfectly.
• Collaborate through the logbook: Have all assistants write detailed notes about how the days and nights have been. This ensures the next assistant starting their shift knows exactly if the patient has slept on her arm, if she is rigid, or if teeth grinding has been intense during the day.
• Do not underestimate a change of scenery: When restlessness or boredom sets in at home, do not remain on the couch. Take a car ride, sit on the balcony, or roll out into the garden. Motion and a change of scenery are often the best dampeners against the anxiety of an Alzheimer’s-stricken brain.

Watching ”Still Alice” Together – Moments of Shared Insight After 11 Years with Alzheimer’s (Autumn 2016)

Many people believe that a person who has lived with severe Alzheimer’s disease for over a decade has completely lost all connection to their past and their inner self. But the truth is quite different. The illness erases much of the external language, but the capacity for deep, existential understanding can still surface in the most breathtaking ways.

The Morning with the Movie ”Still Alice” (October 29, 2016)
In late October 2016, eleven years after Marita received her diagnosis at the age of 55, we experienced a morning that has etched itself into my memory forever. It was a Saturday, and I was completely on my own without any personal assistants. During breakfast, I decided that we would watch the film Still Alice—the powerful story of a woman facing the reality of young-onset Alzheimer’s.

Since Marita could no longer follow a movie on her own, I sat right next to her, reading the subtitles aloud and commenting on the plot for her. What happened next was magical:

• Marita displayed an immediate understanding and a deep, inner insight.
• She initially looked at the TV screen, but then turned her full attention toward me, listening intensely to my words.
• Her facial expression shifted; she showed deep reflection, and for a brief moment, her gaze became profoundly sad.
• Then, she looked at me and smiled.

It was absolutely clear that she understood exactly what the film was about. She truly appreciated that I spoke openly with her about the illness. It was as if, in that very moment, she remembered her own situation and what it was actually like to live in that world. Being able to share that moment of total, silent mutual understanding after eleven years of illness was an immense gift. It proves that the person and the soul never truly disappear.

Nighttime Fingertip Feeling and Care
For these moments of clarity to arise, the physical body must be at peace. The logbooks from that same week show how vital the hidden, nighttime care truly is. At 04:30 AM one morning, I woke up sensing that something wasn't right. Marita had moved in her sleep, leaving one of her lower legs crossed over the other, which had caused her significant pain.

After gently adjusting her position onto her side, I discovered that she was partially wet across her back. It is in these quiet hours of the night that soft care makes all the difference: I washed her gently, dried her skin, and softly scratched her back. Marita found it so soothing that she immediately relaxed and fell back asleep with a calm and beautiful smile.

Life is Meant to Be Lived – Name Days and Excursions
Although Marita was often very, very tired during this period, we refused to let our lives come to a standstill. That same week, we celebrated Marita’s name day with apple cake and whipped cream alongside personal assistants Sarina, Ning, and Anki. We took trips in our minibus to Lidl, purchased new duvets at Jysk, enjoyed beautiful walks through our beloved Herrgårdsparken, and drove out to visit Tina and Urban for coffee.

Our daily routine involved managing her digestive system with laxative Dulcolax to prevent inner stress and offering chewing gum whenever her jaw clenching started. But the goal remained exactly the same: to provide Marita with a dignified, active, and vibrant life out in the light.

My Advice to Relatives:

• Do not avoid speaking about the illness: Never hesitate to talk about Alzheimer’s with your partner, even if you believe they have forgotten. They sense their situation. Putting words to the struggle, watching a film, or sharing a text together can open doors to moments of deep, healing connection.
• Trust the nighttime signals: Learn your partner’s breathing patterns and bodily alignment during the night. A poorly placed leg or a damp back can trigger immense inner anxiety. Turning them softly, washing them, and scratching their back is often the very best sleep medicine.
• Embrace the solitary days: The days you care for your partner entirely on your own are heavy, but they also offer the most intimate and magical moments. Use that time to simply be close, hold hands, and share the quiet spaces of love.

A Birthday in the Blizzard and Food from El Salvador – How the Assistant Team Becomes a Family (Winter 2018)

Many people who are forced to accept personal assistance in their home worry that their private life will disappear and that the house will begin to feel like a sterile medical institution. But with the right attitude, openness, and compassionate leadership, the assistant team can instead be transformed into an extended family. Our logbook from January 2018 shows how our home was filled with the scents of home-baked treats, celebrations, and international food culture in the middle of the cold northern winter.

A Birthday in the Light (January 6, 2018)
In early January 2018, during the darkest winter days, it was my birthday. It was a Saturday, and in my notes, it simply says ”Ingen” (None) after the date—meaning I pulled the entire weight of the care myself without any personal assistants.

Outside, cold winds were blowing and the snow was pouring down. Our daughter and son were sick and couldn't come, but we refused to let that stop our celebration. Marita had a really good and calm day. Together with Tina and Urban, we set the table with pizza and cake here in the house, and we even took a short drive with the cars just to get out and into motion. Being able to celebrate a warm and secure birthday together with Marita after 13 years with the illness was an immense gift.

The Scent of Home-Baked Goods and Foot Massages
When the weather and icy roads forced us to stay indoors, we made sure to fill the time with meaningfulness and soft care. The assistants Antonella and Elsa gave Marita fantastic care. During the days when the snow drifted outside, Marita received soothing foot massages in her armchair, and we took the opportunity to wash her hair and freshen things up.

We also filled the kitchen with the scents of home-baking to create a cozy, domestic atmosphere. We baked chocolate mud cake muffins, and during one of the worst snow days, I stood by the oven myself and baked a Dutch sponge cake. For a damaged brain, familiar scents of baking and cooking are a huge safety factor that dampens anxiety and jaw clenching far better than heavy sedatives.

Cultural Exchange and Electric Wheelchairs in the Team
The beautiful thing about having personal assistants is the unique personalities and cultures they bring into the home. On Sunday, January 7, Antonella and Elsa surprised us by stepping into the kitchen and cooking traditional, authentic food from El Salvador. It became a fantastic and lively moment around the dinner table.

Daily life was also about constantly evolving together. On January 9, we took a walk past the local Heritage Center (Hembygdsgården) and the churchyard, and there Elsa got to try her hand at the difficult art of driving Marita's electric wheelchair. Allowing the assistants to practice and learn on the large, open spaces outdoors created a sense of security for them, which in turn made Marita completely relaxed during our outings.

My Advice to Relatives Leading an Assistant Team:

• Invite them into your life: Do not see the assistants merely as employees who are just there to complete a schedule. Invite them into the community of your home. When they cook food from their homelands or help with baking, it creates a warm and vibrant environment that your partner will thrive in.
• Use scents against winter depression: During dark and cold winter days when you are stuck indoors—bake! The scent of a freshly baked sponge cake or muffins stimulates the senses and creates an immediate calm throughout the house.
• Let the staff practice in safety: Driving a heavy electric wheelchair or handling advanced assistive devices can be nerve-wracking for a new assistant. Take them out to open spaces, such as an empty car park or a wide pathway by a heritage center, and let them practice in peace and quiet before you head out into narrow shops.

Journey to Thailand (2018)

Against All Odds – Our Timeline Leading Up to the Trip

• 2001: The first noticeable symptoms.
• 2005: Diagnosis of Alzheimer’s disease, 55 years old.
• 2009: Approved for LSS. Delusions and hallucinations begin.
• 2010: Severe existential anxiety during autumn.
• 2013: Completely helpless. No speech, unable to process instructions, fed and lifted.
• 2015: Fully wheelchair-bound. Healthcare professionals prepare me for the end-of-life stage.
• 2018 (October): We challenge the system and travel to Thailand.

When living in the final stages of a severe dementia illness, you are often expected to be hidden away in an institution. But I refused to let Marita's life be reduced to mere confinement. In October 2018, when Marita was 69 years old and completely helpless, we planned everything down to the smallest detail to make a trip to Thailand.

Incontinence supplies, draw sheets, and medical aids were packed. Traveling with us was our faithful personal assistant Ning, who was born in Thailand—her knowledge of the language, country, and culture became absolutely invaluable to us. Marita had great trust in her, and they worked together beautifully.

The Struggle Through Sweden: From Bjästa to Arlanda

We left Bjästa at 11:00 AM in Marita's adapted minibus. Marita absolutely loved the car ride itself. Our first stop was at the petrol station in Gnarp, which has become a familiar place for us. With a few tricks and maneuvers, the toilet there can be used to change Marita, but it is incredibly cramped.

After that, accessible toilets are scarce along the Swedish roads. We used a toilet at a rest area just before Uppsala, where the door could barely close. Toilets are always a major problem during our travels in Sweden—they are never adapted for the two of us who need to work together to change incontinence supplies.

We arrived at the Sky City Hotel at Arlanda around five o'clock. The lift worked OK with the wheelchair and the room size was acceptable, but the hotel's shower chair was impossible to use, so it was lucky we brought our own wheeled shower chair. Unfortunately, the bed was too soft, too low, and could not be raised or lowered, making it very heavy to lift Marita up. There was also no proper armchair for her, and the toilet was slightly too small.

Challenges at the Airport and in the Air

Ahead of the long flight, we bought compression stockings for Marita. At check-in, a problem suddenly arose because the staff did not know what type of battery the electric wheelchair used. After calling and reaching a technician at the regional healthcare department, who confirmed it was a gel and dry battery, we were finally able to check in after a long delay.

The airport assistance arrived with a transport wheelchair that lacked a headrest, though they managed to find one eventually. However, the chair could not be tilted backwards, so I had to hold the wheelchair reclined for Marita's sake, but it worked. We received help through the gates, but since Marita cannot stand, both she and the battery charger had to be "swabbed" at the security checkpoint. We barely managed to visit the toilet on our way to the gate. Because we were running a bit late, boarding had already begun, so we had to board very last instead of first as usual.

We were seated in a middle row where it was almost impossible to get Marita in, and I worked myself into a sweat. Fortunately, we were allowed to switch to the row in front, where there was much better space and no seats ahead of us. The transport wheelchair onboard could not roll, so I had to drag it to the toilet. It was a larger toilet, but still so cramped that I had to carry Marita through the door. The staff had to pull the transport chair away so Ning could get inside. I held Marita standing while Ning changed her, before the staff pushed the chair forward again so I could lift Marita back over. Another sweaty round.

Yet Marita fought on and showed such admirable patience. It must have been overwhelming for her with the way I pulled and tugged, but Ning brought a valuable neck pillow so Marita could relax and sleep through a large part of the long journey. Fellow passengers watched our struggle, and when we left the plane, we received heartwarming appreciation from several passengers and particularly from the crew.

An Accessible Paradise in Hua Hin

Upon arrival in Bangkok, to our surprise, we were met with a very spacious toilet. But the way to baggage reclaim was very exhausting for Marita. The transport wheelchair at the airport was miserable, lacking both a headrest and side support, so I had to support Marita while the assistance pulled her. At the airport, we also met up with Noi, a friend of Ning's from northern Thailand, who was to help with personal assistance. We got into a wheelchair-accessible car for the three-and-a-half-hour drive to Hua Hin.

In Hua Hin, I had found a villa with the best possible accessibility, built by a Dutch man in a wheelchair named Jan van der Linde. Here, there was an adjustable bed, a shower chair with wheels, and all the other aids we had managed to acquire—the only thing missing was an electric recliner chair.

Outside the bedroom window, we saw palm trees, the pool, and a healing warmth of 28–30°C. We had our own pool with a jacuzzi equipped with a lift, where Marita took a wonderful dip every evening. On our excursions, we found beautiful boardwalks adapted for wheelchairs. When Marita turned 69, we celebrated her birthday in style by the pool and invited Jan to the party, complete with a hired two-piece band.

The Journey Home and the Flooded Streets

When it was time to leave Hua Hin, we were met with flooded streets. The journey to the airport took five hours instead of three, which unfortunately caused Noi to miss her flight home—her first ever flight. We had to buy her a new ticket for 3,000 Baht, which was twice as much as the first one, and she had to wait a day.

The transport for Marita out to the airplane in Bangkok did not feel entirely dignified. We bumped around in an uncomfortable vehicle, and I sat on pins and needles to keep an eye on her so she wouldn’t slip out of position on the transport chair. But despite all the logistical obstacles, the journey gave us a deeper experience of the world. We proved that life, freedom, and adventure are possible—all the way to the end.

Compassion Needs No Language – Elsa, Centrumkyrkan, and Hidden Messages (Spring 2019)

My logbooks from March 2019 reflect what life with advanced Alzheimer’s looked like as the illness entered its absolute final stages. Marita was now very tired and frequently suffered from intense jaw clenching. Yet, in the midst of this medical routine, we made a discovery that fundamentally changed our view of communication: that there is a language that goes far deeper than words.Elsa and the Universal Language of Compassion
Within healthcare and eldercare, there is endless talk about how verbal language is completely crucial. But through our fantastic personal assistant Elsa, I discovered that there is something far more important. Elsa struggled with Swedish and spoke almost exclusively Spanish, but she possessed a tenderness and a compassion that required no words.Elsa saw Marita with her heart. She readied Marita and made her look beautiful before our outings without me ever having to instruct her—she just did it. Even though they did not share a spoken language, Marita could interpret with absolute sharpness the hidden messages of warmth and safety radiating from Elsa, and Marita reciprocated with a deep, wordless affection. In this work, Elsa had invaluable moral and linguistic support from her compatriot Antonella, who spoke fluent Swedish.Protecting Marita’s Identity at Centrumkyrkan
Marita’s adult life had always revolved deeply around her commitment to the Pentecostal Church, where she, among other things, led its children's hours. When her speech disappeared, her spiritual roots and sense of safety remained completely intact beneath the surface.Antonella and Elsa understood this and took Marita to their church. Even though I myself have never been a churchgoer, it was my obvious duty as a husband to protect Marita’s innermost self. Therefore, I frequently took Marita to her own church in Bjästa, Centrumkyrkan. Sitting in that familiar sanctuary provided her with a profound breathing space of dignity and recognition in the final phase of her illness.The Dentist Visit – A Certificate of Years of Devoted Care (March 20, 2019)
On March 20, 2019, it was time for Marita to visit the dentist. For a person with advanced Alzheimer’s, such a visit can be an immense stress factor. But the appointment went splendidly—Marita was completely calm and cooperative, and the dentist noted that she had beautiful teeth with no problems at all.This was the ultimate certificate of success for my own method with the mouthguard, where I let her hold half the guard outside her mouth and sat beside her holding it until she fell peacefully asleep. It had saved her teeth from being ground down by the severe jaw clenching.When the intense jaw clenching struck in waves around dinner time, I and the deeply caring assistants like Ning met her anxiety with total presence. On March 21, during a difficult evening, Antonella sat down with Marita and painted her nails beautiful, while I prepared a delicious smoothie for her at 8:00 PM. It is all about shifting the focus to pure tenderness.My Advice to Relatives:

• Look beyond the spoken language: When choosing assistants or meeting healthcare staff, do not just look at their grades in language proficiency. Look for compassion and tenderness. A damaged brain instantly senses if a human being radiates genuine warmth, regardless of their native tongue.
• Cherish the person’s spiritual home: If your partner had a church or community engagement, continue taking them to those environments. The spaces, the music, and the atmosphere speak directly to the soul, even when logic has faded away.
• Trust the intuition of the heart: Care for your partner based on who they have been and still are inside. Painting nails or sitting in a church pew can make a greater difference for inner peace than the heaviest medications.

The Final Chapter – A Life of Love, Safety, and Dignity All the Way Home (Autumn 2020)

My logbooks from October and November 2020 show the very last chapters of our 49-year story. Marita was now in the absolute final stage of her life [image_6oPVHV.png]. Her swallowing function had been difficult for a long time, and eventually, it failed completely. Marita could no longer eat or drink . Yet, in the midst of this difficult medical reality, we never left her side [image_6oPVHV.png]. Our home remained a place of pure quality of life, familiar scents, and safety right until the end..

A Daily Routine Filled with Life – To the Very End
The personal assistant team—with Elsa, Antonella and Ning.—carried the daily life together with me. The logbook shows how we refused to let the illness isolate us right up to the finish line]:

• We rolled out for walks in our beloved Herrgårdsparken and around the block in the crisp autumn air .
• The house was filled with wonderful scents when Ning baked cinnamon buns.
• Antonella and Elsa prepared pupusas for lunch and painted Marita’s nails beautiful.
• Tina and Urban faithfully came over with dessert on the weekends when I was on my own.

Despite her increasing congestion and the constant, severe jaw clenching that confined her, we met every single flare-up with total tenderness, honey, and smoothies while it was still possible.

The Final Five Days: A Vigil of Love
When Marita could no longer swallow, the personal assistants stepped back, and I took over completely. I have always slept right next to Marita throughout our entire life together, and it was a matter of course even now. For several years, I had watched over her, observed her, and faithfully turned her every two hours every single night. I know firsthand how one wants to shift positions during the night, and I wanted at all costs to protect her body from painful pressure sores. Those final five days transformed into a quiet, intimate vigil. Day and night, I lay close beside the great love of my life, gently dabbing her lips with water to offer relief and cool comfort . There was no drama, no institutional coldness—just a quiet room filled with 49 years of shared memories. Marita passed away peacefully in the safety of her own home, enveloped by the love that carried us through 20 years of Alzheimer’s disease.

My Final Advice to Family Caregivers:

• Provide care at home for as long as possible: Allowing a human being to pass away in their familiar environment, surrounded by the well-known scents and the voices they love, is the greatest compassionate gift you can give..
• Trust your intuition at the end-of-life stage: When medical language reaches its end, touch takes over. Dabbing the lips, holding hands, and turning the body softly are far more important than all the machines in the world.
• Love overcomes the diagnosis: Alzheimer’s disease can dismantle cognitive ability, speech, and logic. But it can never erase the bond between two people who love each other. The person remains inside, all the way to the very last breath.