Drowning in dementia is a real-life story. It could be yours. In this personal account, Dulcie shares her experience of what it’s like to live with the dementia diagnosis of her life partner. Dulcie’s story is brutally honest and provides useful insights on how to identify and then cope with a disease that’s challenging millions around the world.
Introduction to Dementia
The World Health Organization explains that dementia is one of the major causes of disability and dependency among older people worldwide.
Dementia is a syndrome “usually of a chronic or progressive nature – in which there is deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from normal aging. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment. Consciousness is not affected. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behavior, or motivation.”
The WHO says dementia results from a variety of diseases and injuries that primarily or secondarily affect the brain, such as Alzheimer’s disease or stroke.
- Dementia is a syndrome in which there is deterioration in memory, thinking, behavior and the ability to perform everyday activities.
- Although dementia mainly affects older people, it is not a normal part of aging.
- Worldwide, around 50 million people have dementia, and there are nearly 10 million new cases every year.
- Alzheimer’s disease is the most common form of dementia and may contribute to 60–70% of cases.
- Dementia is one of the major causes of disability and dependency among older people worldwide.
- Dementia has a physical, psychological, social, and economic impact, not only on people with dementia but also on their carers, families, and society at large.
Unfortunately, to date, there is still no prevention, treatment or cure. But of course, scientists are working on it.
Dulcie’s Story – Drowning in Dementia
This is by no means a medical or technical article. It’s a collection of my thoughts and personal experiences of living through the journey of my spouse diagnosed with dementia. Perhaps you will also find some comfort in the fact that you are not unique or alone in these experiences.
This is the story of our journey. Ivan and I married in South Africa in 1959. We were extremely young at 22 and 20. In those days it was expected of you – no messing around! We had two sons, Rafael and Gary, in 1962 and 1965. They were both educated in South Africa. Due to the political situation and the apartheid regime, they left. Rafael to Israel, Gary to London. Both married and our first granddaughter was born in 1991 in Israel. So began our life as ‘global grandparents’. We traveled for the births of our seven grandchildren and, of course, made many visits in between.
A Good Life
We also belonged to an international organization called YPO. We traveled a lot, attending and arranging various conferences. Then there were also the vacations. We had a full life. Ivan had always been a bit scatty, in the nicest, but rather annoying, sense. I am sure that as a child he had some sort of ADHD. However, in his childhood days, it was not a recognized disorder, nor treated in any way. The child was simply labeled fidgety, naughty or just not paying attention. One of his high school teachers told him that he might as well quit school as soon as possible and get a job, as he was never going to amount to anything.
A Successful Career
She was wrong. Ivan obtained a Bachelor of Commerce degree and later in life he returned to University and completed a graduate certificate in Company Taxation. When we were chatting with a consultant in the early days of memory loss, I suggested that Ivan might be suffering from senile ADHD. The doctor did not appreciate the black humor! Humour, regardless of color, becomes a coping mechanism when facing the reality of a person close to you developing cognitive impairment. I think the medical establishment should be more sensitive and understanding. After all, denial is a normal reaction.
A Healthy Active Life
Ivan started, and successfully ran, a business that developed a number of factories in South Africa. He was a sportsman, yachting, horse riding, cycling. He also collected and rebuilt vintage cars. Furthermore, he was never ill, except for a few broken bones after falling off his horse. Then one day, at the age of 60, he felt a pain in his chest. A cardiologist admitted him to the hospital for investigation. He was rushed into an operating theatre for emergency triple-by-pass surgery. This was a huge shock to him, as he always thought he was invincible. After his recovery, he changed his eating habits drastically. No cholesterol at all. He was a very determined person, he stuck to his new diet rigidly and was in excellent health.
Emigrating to the United Kingdom
Meanwhile, as our two sons had left South Africa and we were traveling extensively to visit our grandchildren, we decided to emigrate to the UK. Ivan joined Gary in his UK business, as there was no way he could retire.
Years later, with the onset of dementia, Ivan’s working habits strongly influenced the way the disease played out. He had to be busy working all the time. That was his main function in life. In his illness, he was still searching through papers and keeping up some sort of semblance of his previous lifestyle of working continuously. I think the character of the person kind of determines the behavior in the Alzheimer’s process. Everyone is different. Although there seem to be some things that are ‘normal’ and manifest in many cases.
Emigration at our age was very hard. We were already in our 60s and we were leaving all we knew behind. Including my mother, and all our lifelong friends. We made some lovely new friends although we obviously did not have common roots, so there was no past history. Of course, we were lucky too. We were coming to be close to family and Ivan also had an occupation.
Life in London
Ivan continued to work and both of us enjoyed the family, as well as the culture London has to offer. We moved into a flat, which was a very different way of living to what we were used to. We enjoyed the challenge. Ivan was still riding horses but found it very different to riding in South Africa. Finally, he gave up horse riding and took up cycling instead. He rode many charity bike races with Gary all over the world. It became a passion. We were also still very involved with our YPO group. We traveled to seminars and attended many functions in London. Ivan was also a mentor to students at the London Business School.
Mild Cognitive Impairment
About four years ago I began noticing that Ivan was being forgetful, especially not remembering words. On reflection, I now realize that there were signs much earlier than that. However, we probably didn’t think they were worth investigating or talking about. This was a huge mistake.
Every sign that you think is unusual is worth investigating. We put it down to the normal aging process. Of course, we were helping him by filling in the forgotten words. The most frequently used word in his vocabulary was ‘what-you-ma-call-it’! We bumbled on like this for quite some time, until other things were being forgotten. Keys were lost very often. Mobile telephones, glasses, etc. also went missing. We found some eventually. Sometimes not in the places one would expect. Others, however, were never found. I’m sure one day they’ll appear in surprising places. This was quite a trying time as the reality of aging was beginning to manifest.
Many Tests Later
We decided to discuss this with Ivan’s GP. Then we were referred to various memory specialists and consultants. After many tests, Ivan was diagnosed with ‘mild cognitive impairment’. In retrospect, these were early days in a long journey. At the time we were happy to accept the euphemism. We avoided the need to deal with something potentially more threatening. We got on with our lives. I covered for him often, especially socially, as his loss of vocabulary was becoming quite obvious.
Drowning in Dementia. The Diagnosis
Finally, a year later, we consulted a geriatric physician. Then a geriatric psychiatrist, who diagnosed dementia. Ivan was not having that at all, so of course, took a dislike to the doctor. He said there was nothing wrong with him. He was quite arrogant about it and of course in total denial. When I confronted him, he looked at me aghast. He said there was certainly nothing wrong with him, so it must be me! I think that if he had accepted that there was something wrong, we could possibly have addressed the problem earlier and worked together on a better way forward.
Again we continued in a semblance of ‘normal everyday life’ and dealt with it that way. Ivan was in denial and dealing with the situation required a lot of pretending on my part. Life went on. We tried to be as ‘normal’ as possible. At the time he was put on medication, but I am not convinced that it had any benefit. One must try whatever is available and suitable at the time. The scary thing about the situation was the feeling of losing control.
Dealing with the Driving Issue
About this time the driving situation became a problem. Given his denial, Ivan obviously felt he was okay to drive, but because we insisted, he approached the DVLA, who asked for letters from his GP, stating that he was medically capable of driving. These were provided by Ivan’s GP and so he went on driving. I was a passenger a few times when I felt he was not judging the traffic correctly, especially at roundabouts. Eventually, I refused to drive with him, but he was still driving on his own. Gary, our son, employed a driver and we persuaded Ivan to ride with him to the office as well as various errands, etc. He fought against this but started accepting the driver more over time. Although he still preferred to drive himself.
A Danger to Himself and Others
Eventually, it all came to a head one evening when he didn’t arrive home when expected. After a couple of very worrying hours, when he wasn’t answering his phone, my phone rang and a stranger asked me if I knew Ivan. It was a hairy moment until we established that this lovely man was calling from Ivan’s phone. He worked in a petrol station. Apparently Ivan went in to ask him for directions as he was lost. The gentleman realized that something wasn’t right.
He asked Ivan for his phone and phoned me. Ivan was still able to tell him my name. When I asked for an address to come and fetch him, I was surprised to be given a postal code in SW London. We live in NW London, so he had driven very far. He did not have a clue where he was, or indeed where he was going. After this incident, my sons and I decided there should be no more driving. He was becoming a danger to himself and everyone else.
I take off my hat to the gentleman who called me. Someone less honest could have stolen all Ivan’s cash, credit cards, cellphone and indeed even the car. It was extremely difficult to discuss all of this with Ivan. I also question the system for not having more efficient and thorough methods for stopping incapable drivers from being on our roads.
We Had To Be Firm
We had a major problem. Ivan kept on telling us that the DVLA said he was okay to drive. He would angrily show us his driving license. Rafael and Gary would respond that it had expired. Although he objected vociferously, he wasn’t able to read the expiry date on the license. Eventually, we just took it away and told him it had expired. This was not an easy time. He was extremely angry. But fortunately for me, he agreed to go with the driver to the office every morning.
When we went out in the evening I drove in my car and he finally got used to that situation. We had to keep his car out of sight, telling him that it was in for a service. Or think of some reason why it was not there. We had to be very firm and also harsh to be kind. Ivan spent a huge amount of time trying to go to the DVLA. Or he would look for old doctors’ letters confirming that he was okay to drive. He even tried to apply for a new driver’s license. We were protecting him and other people on the roads!
When people tell you how hard it is to take away someone’s independence by not letting them drive anymore, it is true. It’s the hardest thing, but of course necessary. This was especially so for Ivan, as driving was a huge part of his life. He had first learned to drive on a remote farm in South Africa at the age of 14 and obtained his license at 17. He had owned many cars throughout his life and he also collected vintage cars. This was a particularly hard time for us all, and the term ‘tough love’ was very relevant.
Pin Numbers and Maintaining Pride
Life carried on. We were so lucky that Gary could maintain an office for Ivan. He went in every day, sat at a desk and interacted with the people working there. It kept up a form of normality for him and for me. I too could get on with my life during the day and know that he was okay with people who cared for him. Of course, in the beginning, he was still adding something to the business. However, that became less and less as his dementia progressed. The crew at the office were amazing in humoring him. Mustafa, the driver, would pick him up at 9.30 am and take him to the office.
Mustafa would also take him to see his vintage cars, which were in various stages of restoration. He also loved going to the bank. He made many appointments to see the staff at the bank to ‘open an account’, which of course he already had. I had to phone and cancel the appointments and explain the situation to them many times. They too were exceptionally patient and understanding.
Eventually, we had to take away his various credit cards and just left him with one debit card. The PIN of which Mustafa knew, so that Ivan could still go to the barber etc. and ‘pay himself’. We went through many restaurant dinners with friends where he insisted on paying. He would not let me use my credit card, as that would diminish him. But of course, he had no idea what the PIN number of his card was. We repeated this charade many times. It was just easier to let it ride, help him with the PIN, and let him maintain his pride. One does learn to choose one’s battles!
Getting on with life with subtle changes
We were carrying on with our lives, although making subtle changes. Ivan always took care of our finances from the time we married in 1959. This was considered quite a normal thing. As his illness progressed, however, I had to learn and take over the banking and control of finances, etc. This of course was hard for both of us, as he did not give up control willingly. For a person who was used to running fairly large businesses and taking control of all of his life, this was not easy.
Many readers of my generation will understand how hard it is to start learning about bills, bank statements, taxation, etc at an advanced age. You may need some assistance with this. If you do there are many people who you could turn to for help, at the bank or building society, etc. It can be daunting, but if you are going through this, I can assure you, one can manage and once you do, you will feel empowered.
On Taking Family Holidays
We also managed to continue taking holidays. However, I found myself sheltering him, and not wanting particularly to socialize with strangers. I found that most people do not understand dementia. The person looks well and healthy, and as with most mental illnesses, including depression, it is hard for people to appreciate the various behaviors that manifest. One lady asked me very subtly if Ivan had had a stroke. Traveling by air was very problematic – the confusion of being in an aircraft became extreme, and getting through the various formalities of an airport was difficult. Time loses its meaning for the sufferer. Sticking to a travel schedule was a fruitless and very frustrating exercise. In the end, it is better to stay in familiar surroundings, without the pressure of time management
One of the things that manifested in Ivan’s behavior was his reaction to his reflection in a mirror. Apparently people with dementia do not recognize themselves in a reflection. They think of themselves as they were when they were much younger. If Ivan was in a good mood, he would wave at his reflection. If he was in a bad mood, he would attack and hit the mirror. So we tried to avoid mirrors, which is virtually impossible. Especially in the bathroom.
In time it became necessary to supervise Ivan in all bathroom activities. One day I was driving him somewhere. I noticed that his face was white. I worked out that he had smeared toothpaste all over his face as if it was shaving cream and then of course it dries solid. He looked like a ghost. He also couldn’t aim properly on the toilet, so I was always mopping the floor.
Incontinence and dementia
Things were deteriorating. Incontinence was becoming an issue, especially whilst traveling. Having to explain to a ship’s cabin crew or hotel staff about this was always embarrassing. Mainly for me, as Ivan was totally unaware of anything going wrong. He might have had some idea, but certainly wasn’t letting it affect him in any way.
If we were on a cruise or a holiday, and doing a tour, it was always extremely stressful to adhere to a time schedule. Ivan also got lost a couple of times on holiday. If he wanted to go to a public men’s toilet, I always followed him to help, but of course, had to wait outside the men’s toilet. He often didn’t come out for a while. It was always worrying to think about what exactly he was doing in there. I once had to go in and get him out, and these behavior oddities were getting worse. When we came home from the last trip I decided it was just too stressful to travel anymore. As I said, familiar surroundings are best.
Behavior Patterns Impossible to Manage At Home
We were sort of managing at home, but things were getting a bit hairy in our flat. Ivan would have what the dementia experts call ‘sundowning’. This is when the person gets very anxious and starts running around the place. They collect objects, with absolutely no plan of what to do with them. It normally happens at the end of the day, hence the name. I have photos of him weighed down with a whole lot of unrelated things, hardly able to carry them, and growing increasingly distressed. At night he would often wander around collecting stuff.
I would get up and find an absolute mess of things all over. He would also turn on a tap and forget to turn it off. Distressingly I would have to lock the front door and remove the key. I was afraid that he would leave and get lost or cause some havoc in the public areas of our building.
Mustafa was now bringing him home earlier in the afternoon. I would nervously wait for this behavior pattern to manifest. For some time the TV was an option that could distract him from wandering. However his concentration span was becoming shorter and shorter. He would watch for five minutes, and then get up and start wandering around.
I looked for help with this situation and considered having a professional care worker at home for a few hours each day. I also looked into having Ivan attend a day-care center for sufferers of dementia. We tried with care workers a couple of times during the day. He was not willing to relate to these people at all. On one occasion he told the carer very politely that he would escort her down to her car, as she really had to go! Interestingly, his good manners – opening the door for ladies, etc. were still very much in evidence.
It is really helpful if a dementia sufferer is willing to attend ‘sessions’ where they might paint a picture, bake a cake, play some games, or sing together in a group. There are quite a few of these facilities around. The person has to be cooperative and willing to partake in them. Ivan was not the type of person who would gladly do any of these activities, so that was not an option for us.
One evening Ivan was in an extremely anxious and aggressive state. He refused to let me help him go to bed. He was running around grabbing stuff as usual. Essentially, he was quite destructive in this kind of mood and damaged and broke a lot of things. I needed help and knew Gary was out for dinner in the area. I did not want to disturb him and waited as long as I could. But at 10.30 pm I called him with an SOS. It took a lot for me to resort to calling my son at night to help me with Ivan. Gary came over and together we got him into bed. Gary had to physically lift him up. Out of desperation we also gave him a sleeping pill.
Help for when you are drowning in dementia
After that incident and a couple of others, it was clear I was no longer physically or mentally fit to look after Ivan anymore. Even with the best will in the world. He needed help with everything: dressing, showering, shaving, toilet hygiene, even eating. I was doing a load of washing every day as the bed linen needed to be changed. By the time we were both dressed and ready for the day, I was exhausted. Naturally, I think, I resented what I had to do.
Although I had very mixed feelings; although you know perfectly well that it is not the sufferer’s fault you still resent it. It’s important to acknowledge this resentment because it is a human reaction to the situation and should not be repressed. We’ve had a couple of absolutely horrendous incidents relating to his bowel movements. When I came into the toilet to help him, he had smeared the poo all over the sink, taps, and his hands. Confronted with this scene I started screaming at him not to touch another thing. Although I knew he was not to blame, I could not help myself. Screaming is the worst thing one can do, but we are all human!
Nights were also becoming difficult. He would get out of bed and start wandering around. I woke up one night and found him collecting clothes and all sorts of things, aimlessly walking around, although in a very determined way. Apparently they know that they have to get up and do something, but don’t know what exactly that is. The front door had to be double locked and the key hidden. He had walked once out of the flat and someone in our complex found him and brought him home.
One night I woke up and found him sleeping on the floor, and on another occasion I found him asleep in the bathtub. Getting him out of the bath was really difficult, as was getting him back into bed. I always left the night light on. Sadly, his spatial judgment went entirely. As a result of this wandering around, I was not getting enough sleep, which left me exhausted the next day, and less able to cope.
I learned to hide certain objects, and to not leave anything around that might be spilled. One day I left an open can of coke in the kitchen, and eventually found coke all over the bathroom floor and on the beds, which I had just changed.
I was still managing to prepare his breakfast. Once he was dressed and shaved, I would sit him down in the kitchen, so that I could shower and dress while he ate. That worked only until he started pouring the orange juice all over, and sometimes ate the serviette. He once got up from breakfast and I found him in the lounge eating his packed lunch. We reached a point where total supervision was necessary.
The Next Step
I finally reached the conclusion that we had to change something fundamental in the way we were handling the situation. Our flat was not very big and so the thought of a care worker being here 24/7 was unappealing. I started investigating care homes, which is a very depressing task. Finally, I found a beautiful, brand new home that offered a dementia care unit. Gary and I went to interview them, and it was promising. It was beautifully set up with a dementia wing on a separate floor, and lots of space for patients to move around. It was very well equipped with lots of cuddly cushions and all sorts of objects from the past that might be familiar to older people.
After consulting with Rafael and Gary I reached the decision to move Ivan to the home. This was an extremely difficult and emotional decision to make, but unavoidable and necessary. You really need the support of your family at this time to help make this choice.
Financial Impact of Dementia
At this point, I have to say that I feel very fortunate to be able to do all we have. I am only too aware that there are hundreds of people and families, who are struggling on their own to take care of their dementia sufferers. If you don’t have the funds, it is a lot more difficult. There is a minimal amount of support or care hours you can get from the NHS. So I am just being honest, and would not like anyone to feel that “it’s all very well for her”.
A lot of the problems and experiences are the same, whether you have the funds or not. You do need to get all the help and support that you can, whether from friends, family or indeed your GP surgery. Most surgeries are really good at taking care of the “carers”. Some respite from the situation is very important and very necessary, even for a couple of hours.
The decision to put Ivan in a care home was a difficult one. The guilt is huge, despite the fact you understand rationally that there is no other choice.
I had to furnish the room at the care home and get everything ready. Then came the day Gary and I took him there. We had a fairly pleasant day, had lunch with Ivan and then had to leave him there. He seemed okay with the carers and we left. We came home to my flat, had a chat and coffee, and then I sent Gary home – we were pretty wrung out by then. When he left, I let go completely and walked from room to room sobbing. I realized then Ivan was never coming back to the flat. The experience is similar to bereavement, but with the person, or part of the person still very much alive. To deal with all these mixed emotions takes a lot of energy and courage. But it is amazing what we can do if we have to.
Plans Go Out The Window
Ivan seemed to settle down to a degree. We told him that he was there to get better. I spent a lot of time with him, had lunch, went for walks and sat in the various lounges together. The family visited regularly, even our family in Israel. We thought we had a solution where he was well taken care of.
However, things did not turn out as planned. Through the weeks, Ivan became increasingly restless. Staff at the home were reluctant to use sedatives. They felt that we should try and settle Ivan without any drugs. I was really relying on the care home to manage this, and in retrospect, I erred in not calling in the geriatric psychiatrist immediately. The staff, however, did involve an NHS doctor, who arranged for him to be assessed by a psychiatric team. However, that would have taken up to six weeks. In the meantime, Ivan was growing more and more unhappy in the situation.
Restless and unhappy
During visits, he would try and pack his things in a small old suitcase. This included part of the ‘props’ placed in the hallway by the home’s interior designers to give a semblance of familiarity. He would say “We can go now”…. Yet by this time his walking had slowed and even walks in the grounds were a challenge. This was a man who had been used to having complete control of everything all his life and now every aspect was totally out of his control.
The team of caregivers at the home were very nice, but in the end, could not manage him. His loss of control and his apparent frustration at not being able to communicate with us how unhappy he was, began manifesting into quite aggressive behavior. He did a fair amount of damage and also hit one of the carers.
The Move Back Home
Things came to a head on a Sunday evening. The care home suspected that he had an infection, which was influencing his aggressive behavior. They decided to send him to A&E in an ambulance. Gary rushed over, and during the very long wait for an ambulance, we held an intense family consultation, with many local and international calls. A longstanding family friend, herself a geriatric psychiatrist, advised that a trip to A&E. On a Sunday night, this would be the worst possible thing for Ivan. With all our backing, Gary took the decision to take him home. So ended his time at the care home with great disappointment and frustration all round.
The family quickly mobilized and settled him in for the night at Gary and Lindsay’s home with a caregiver that Lindsay arranged urgently. At this point, we were all drowning. Not knowing what plan we were going to follow and what would come next.
Gary, fortunately, has a cottage in the garden of his home. The cottage had earlier served as his company’s office, where Ivan’s office had been. Gary suggested that it would be a good idea to settle Ivan in the cottage with full-time caregivers. The company had moved out so it was a matter of getting the cottage ready for Ivan. Removing mirrors, building a ramp over the stairs and preparing his bedroom, etc.
We called the geriatric psychiatrist who had first diagnosed Ivan. Sometimes when I was desperate for some cooperation, I would say to Ivan “You have dementia, so let’s work together on this”. He would look at me quite accusingly and say “Nothing wrong with me, it is you.” Anyway, we called her in and she prescribed a medication regime for him. She also provided a sedative, a drug to be used only in emergency situations if we couldn’t manage him.
Nothing Is Wrong With me
We had three very trying weeks while the cottage was being made ‘Ivan friendly’. He did a fair amount of damage in Gary’s home at this time. Like he broke a huge glass tabletop in which he inadvertently saw his reflection. Anything and everything breakable, or a danger to Ivan, had to be put away. We were trying to get a team of carers into place. Sometimes Ivan took a dislike to the carer on duty. This was an extremely trying time for us all.
Life in the Cottage
Finally, the cottage was ready and we moved Ivan in with the carer. Gary did a beautiful job. The place was more familiar for Ivan, as his office had been there for years. He seemed to calm down and more settled. Ivan still has moments of anxiety and aggression. With his deteriorating condition, he was finding it increasingly difficult to move. And so started the organization of various aids for him, to assist the carers.
First a wheelchair, then a profile bed that tilted, then a movable commode and a hoist. On reflection, I realize that whenever the carer suggested that we needed another of these aids, I balked at each one in turn. Then I finally realized that we did indeed need it all! I think it was a form of denial, an avoidance tactic on my part. Part of me was saying that if you needed all these aids, you had to be really sick and incapacitated, and I was probably trying to believe that this was not so!
I had to register him, now for the third time, at a new GP practice. The first one was near where we lived. The second one was near the care home that we moved him to, and the third one was in the area where he now was living. The organization and bureaucracy that one has to go through, and all the various departments there are to coordinate with, not to mention the need to visit each practice with Ivan, are mind-blowing.
The social worker that I was seeing told me that it was a really good thing to have Ivan cared for, as this would relieve me of the role of his carer. She suggested that I could become a wife again and visit without any ‘jobs’ to do. Well, unfortunately, it doesn’t exactly work like that. I still have to manage the place where he is living. Look after all doctor’s appointments and the medications, ensure the rotation of carers is taken care of and manage their wages, worry about the shopping, etc.
Putting the Right Dementia Care in Place
One of the major problems arising from this situation is putting the right care program in place. We tried a few different carers, who either didn’t get on with Ivan or with each other. Then, do you choose a male carer or a female carer? In actual fact, it doesn’t matter as long as they are good and relate well to the patient, as well as the rest of the household. This is ongoing and changes almost daily. Even when you have an amazing carer, they need to have time off, and so replacements are needed. Any new face can be disturbing to Ivan, and he sometimes shows fright in his eyes. Also, any sudden movement around him is distressing.
Visit Every Day
I visit every day and am always looking for a spark of conversation or even concentration. I keep on telling myself that due to his denial of the illness, he is not unhappy, and does appear at most times now to be content. He can sit all day going through old papers and car magazines, not really taking anything in. Maybe he feels that he is still working?
Dementia is an awful illness as your loved one becomes a totally different person. You try against logic, to find the person you knew. So as I mentioned earlier, you are really mourning the person, but are still having to deal with the daily trauma and problems that arise. Yet you don’t really feel entitled to mourn. Nor do you have the time to enjoy old memories, as there is too much going on in the present.
Naturally, each person is different and much of their behavior with dementia depends on their character traits. What their life was like before the onset of the illness. Some people are very calm and are happy to sit around, paint a picture, or listen to music. Unfortunately in our case, this is not so. Ivan was a ‘type A’ personality, accustomed to being active and in control. This makes it very difficult to fill in the time for him productively, or rather satisfyingly. Ivan was never interested in board games or cards, but rather active sport or working.
Mourning your loss
When I first started coping with dementia, I was quite interested in and gained knowledge from a wide variety of organizations and websites. However, after a lot of practical experience, I stopped depending on other people’s knowledge. I realized that I had to find my own methods of dealing with various situations. Promoting awareness of dementia is essential and very helpful. However, every dementia journey is unique, both for the sufferer and for those around them.
Gary often reminds me that ‘there are people in more difficult situations and we have to look at the positives. I remind myself of that every day, but it’s hard.
Looking for the Postives
I’m so lucky I have my family to support me. Both my sons have been incredible, Gary practically, and on an everyday basis. Rafael, of course, from afar, as he, Celine and their kids are in Israel. Lindsay and our four local grandchildren have been incredible in visiting Ivan almost every day. This is an illness that affects the whole family.
People often tell me that I should try and get my life back, which I will do in time. It’s all still too immediate and ongoing. I can’t really put it out of my mind for any length of time. I try and do normal things, but subconsciously am always expecting a phone call telling me of another problem that has arisen, which has to be taken care of. Reality is that there is no ‘getting my life back’ because the life I had for many years next to Ivan is now gone. Even if he is still alive. Instead, I work daily to make a new life, rediscovering myself and ensuring I go on.
I celebrated my 80th birthday recently, and although we had planned a family reunion holiday away somewhere, we canceled that as we just didn’t have the head or the heart for big celebrations. Nor could we leave Ivan for more than a couple of days. All my family came from Israel, however, and we had a lovely bitter-sweet family dinner with tears and laughter and love.
Life has many surprises and twists and turns. Ultimately, the way you choose to deal with it all can make it worthwhile and fulfilling. It is a choice – you can be miserable all of the time, or choose to be upbeat, so people will want to be with you, rather than avoid you. The support from family and friends is so important. Fortunately, I have huge amounts of both. I also belong to a support group or ‘Forum’, and that has been amazing, as my Forum friends have gone through so many ups and downs with me through the last 15 years or so.
A New Routine
Life is now beginning to settle into a sort of routine. We have wonderful carers, Ivan’s driver-cum-carer extraordinaire Mustafa, and two fantastic women, Daisy and Naneth. All of whom are totally invaluable to us. I am trying to pull away a little from the everyday stresses of trying to talk to Ivan, and him being quite angry with me. Although I am not quite sure why. But every day there is a bit of deterioration, and now his mobility is almost nothing. The carers do try and get him to walk a bit each day, but that is getting more and more difficult. It becomes easier for me to try to avoid seeing all of this if I can help it, as it really is so upsetting.
Support and Love
Friends and family faithfully continue to visit, and people have been incredibly supportive. Both our friends and family, and also Gary’s friends; but Ivan reacts less and less to them as time passes. Familiar surroundings and quiet are the best things for him at the moment. I find that when we have guests and I am talking to them, he gets really angry. I suppose it is to a degree of frustration at not being able to follow the conversation. So he likes full attention and “conversation” at his own level.
At this point, there is no more semblance of “pretend working” for Ivan. Although it does give him comfort to hold some papers or car magazines in his hands. His perception of space is deteriorating – sometimes he will hold something to eat or drink, but not quite know what to do with it. The weird thing is that occasionally he might come out with a relevant comment. It is like a flash of memory. These flashes make you think there is something still there, but they go as quickly as they come.
Challenges with Dementia Support
Getting specialist equipment is an ongoing problem and it seems that every week there is something else to bring in to assist Ivan, and of course the carers. The NHS is amazing with the help they offer, but of course they are also under huge pressure. There are so many different departments to deal with, and it can take a long time, so that one often has to either hire or if you can afford it, to buy certain pieces of equipment, until the NHS can provide them.
Another problem arising now is Ivan’s inability at times to drink fluids. Apparently liquid does not trigger his swallowing mechanism as well as solid foods. His carers have begun to thicken the liquids to avoid the danger of fluid staying in his mouth and trickling down into his lungs.
My thoughts on drowning in dementia
In talking to a friend who lives in a retirement facility, I learned that there are many people that she sees on a daily basis, in whom she notices the early signs of dementia, but who are totally unaware. As are their partners. In some cases it might be that they actively try and ignore these signs, thinking that it will be okay. Of course, the sooner one addresses the problem and seeks a diagnosis, the greater chance there is of slowing the process down if that is at all possible. Also, a person should come to terms with it early and accept medical intervention. Ivan fought it all the way, so I fully understand this avoidance tactic.
How Are You?
In the last few months, we have ‘celebrated’ Ivan’s 82nd birthday and also our 60th wedding anniversary. It is quite hard for those watching his decline, as one wants to celebrate. He obviously does not understand the significance of those days. Nevertheless, there was a cake and candles for all!
There is a thought which I want to share. Everyone asks you how the patient is – very few people ask how ‘you’ are doing. Thank you to those people who ask about ‘you’!
Key Lessons from Drowning in Dementia
In conclusion, there are three things which I hope you can take from these thoughts:
1. “It is what it is”
As people live longer, more and more people will be diagnosed with dementia of one form or another as they grow older. So do the best you can under your particular circumstances – remember that everyone is different, and your loved one’s dementia is not your fault!!
2. Heed the early warning signs
If more people are aware of the early warning signs, they could be helped, at least by delaying the devastating effects of this horrendous illness and having a fair time to make plans. It is also most important that the person showing the signs should be helped to accept the condition for what it is. They should also be encouraged to accept whatever treatment is available. In sorting through some old files of Ivan’s recently, I became aware that the signs were there a long time ago, but we both ignored them. His handwriting changed, his spelling became ridiculous and nonsensical, papers were filed in the wrong places, etc. In mitigation, I would say that I respected his privacy. I never examined his files. But there were other early signs that I ignored. So I would say ‘Be aware of changes and don’t be scared of investigating the causes’.
3. Look after yourself
See that you sleep properly, exercise as much as you can, and try to have some time away from the situation if that is at all possible. Laugh a lot, otherwise, you cry! Laughter definitely helps you, and those around you, to cope. At times you can, if you allow yourself to, find relief in humor and laugh at the behavior or situations you might find yourself in. It is black humor, but nevertheless you can and should laugh! Of course not at the person suffering!
They say you cannot judge anyone until you have walked in their shoes. This is so true, and I take off my hat to all the ‘heroes’ who have coped with and supported their loved ones through the gradual horror of drowning in dementia. The shoes are uncomfortable, but try and look on the bright side, and make the best of all the good things in your life.
Dementia is a Long Goodbye
Alzheimer’s disease is a LONG GOODBYE – you are losing a little bit of a person every day. I hope that reading these thoughts and experiences which I have had on this journey will resonate with, and maybe help others on their personal journeys through this minefield of dementia and that they may find in them not only useful advice but also solace and comfort.
My heartfelt thanks go out to my whole family, sons, daughters-in-law, grandchildren, and grandchildren-in-law, without whom I couldn’t have coped. A very special thanks to Jose, who has helped me so much, by sharing so many coping mechanisms with me. To my cousin Philip, who introduced me to him. Thank you also to all my wonderful friends and carers, who have all looked after me so well.
I dedicate this story to all those ‘heroes’ out there who are going through this nightmare of watching someone with dementia fade away day by day. Whether you are the main carer, a relative or a friend, your life will be significantly affected. Look after yourselves as best you can so that you can cope with whatever is thrown at you.
Be kind to yourself- it is not your fault.
We kept drowning in dementia in its longer form to maintain the heartfelt story flow. Dulcie and Ivan live in the United Kingdom. It’s important to note that medical support, insurance and even the legal framework around a dementia diagnosis differs from country to country. If you suspect a family member has signs of the disease, it’s very important to understand what to do in the context of the country and the laws. Financial planning is critical, as is social support. In most countries, there are established dementia care support groups to help advise families. Inform yourself and seek relevant help and expert advice as soon as you can to ensure the best outcome for a loved one.