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October 2013
A family's struggle with dementia
Oct 28, 2013 8:29 PM

My mom was diagnosed with ovarian cancer in November 2009. She died in August 2010 at 76 years old. The disease that dominated her life, though, was dementia.

Margaret’s Life Prior to Moving to a Care Facility

My mother was independent, intelligent and very private. She had very strict boundaries and questions about her health and finances were off limits. My father died, after a brief illness, when my mom was 52. He was 6 years away from retirement and her world was shattered. I’m not an expert on dementia. I only know my mom’s case. We knew she’d had mini strokes over the years. In her case:

• Her short term memory was awful
• She repeated herself constantly (told the same stories and asked the same question)
• She had trouble with context and wasn’t able to string information together and come to logical conclusions
• She couldn’t remember dates and was confused by numbers.
• She would acknowledge that she had challenges but believed she could live independently
• She had no ability to manage her medication or meals. She was always extremely well groomed and looked great, though

In 2001, after several odd incidents, involving my mother, I decided it was time to contact her doctor and express my concerns about my mother’s memory. My mother was 67. The doctor was surprised that I thought my mom had dementia. We made an appointment and the doctor asked my mom a few questions, designed for those with memory loss. The doctor agreed that there might be some sort of vascular dementia. The situation was difficult because I had young kids and my mother lived 3 hours away. My sister and I tried hard to support her but her illness was confusing. She could seem normal and well. It became hard to know if we were overreacting.

In 2002, she blacked out outside of her condo. She fell down and was completely disoriented. A neighbor saw her and thought she was drunk. She had been on her way to a wedding with my aunt. They ended up going to the wedding anyway. However, people kept asking my aunt what was wrong with my mother because she wasn’t able to follow conversations.

Things got progressively worse. Another letter to her doctor resulted in a prescription for Aricept. Mom was hardly sleeping by now, which made her dementia worse. Almost none of my mother’s problems were apparent when we spoke to her on the phone. She was good at covering up her issues. She always had CBC Radio on so she was great at talking about the economy or current events. Many people who came in to contact with her had no idea she had dementia. You had to delve deeper to see the problem.

In 2004, my mother said she wanted to move back to Toronto. After many angst filled conversations, we were able to persuade her to move to a retirement home that was close to my sister and me. This home said they could deal with her memory loss while giving her as much independence as she could handle. They assured us that, as she worsened, there would be other supports available to her.

A few months before she moved to the retirement home, my mom told us that she needed to see a doctor at a hospital in Barrie. My aunt would take her to this appointment. As it turned out, she was having hemorrhoids removed and she needed a general anesthesia. Whatever surgery prep she was supposed to do wasn’t done. My aunt said that the doctor at the hospital was appalled that none of my mom’s children were there to help her. We had no idea she was having surgery. She told us it was a doctor’s appointment. After the surgery, she was belligerent and confused and the hospital staff told her to leave, so my aunt took her home. That’s when we found out what happened.

My mother’s family doctor knew she had dementia but somehow, nobody at the hospital in Barrie knew or if they knew, they assumed that she shared all of her medical information with her children. She didn’t, of course. A few months later, just before she moved back to Toronto, she finally saw a gerontologist. My aunt went with her and, again, my mother never told us anything even though we were in regular contact. My aunt kept us informed. The doctor gave my mom several memory tests. She failed all of them. The doctor told her that she had memory problems but said it wasn’t Alzheimer’s. My mother was very relieved that it wasn’t Alzheimer’s and felt this meant that she didn’t have problems with her memory.

When she got to the retirement home, the doctor said her blood pressure wasn’t being managed. How does a person with dementia, living alone, manage her medication? She wouldn’t have been open to someone else give her medication. She didn’t believe she needed that kind of assistance.

Margaret’s Experiences with the Medical System after her Move to a Care Facility

Shortly after my mother moved to the retirement home, we wanted her to see a cardiologist since she continued to appear to have mini-strokes and each one seemed to cause more memory damage. She wouldn’t (couldn’t?) cooperate with any of the tests. The doctor said her dementia was profound and she covered it well because she had good social skills. He wanted to do a series of tests but she wouldn’t have been able to follow the instructions so we decided not to go forward.

Basal cell carcinoma
My mom had a bump on her nose so we took her to have it checked. The doctor determined that the bump was basal cell carcinoma. My mother didn’t want to have it removed. We made an appointment to have the bump taken off. My sister called to confirm the appointment and found out that my mother had cancelled it, saying she’d have radiation instead. My mother’s information sheet indicated that she had dementia, yet she was able to cancel appointments and change treatment decisions without anyone informing the family or her regular doctor. My mom would have found it extremely challenging to sit still for radiation treatments.

When we got to the dermatologist’s office to have the carcinoma removed, I whispered to the nurse to remind her that my mom had dementia. I couldn’t say this in front of my mother because she was very private and she didn’t think she had dementia. I’d hoped that telling the nurse about my mom’s challenges would mean that the medical professionals would then understand that they’d need to ask me certain questions. They’d also need to understand that my mom would have trouble understanding directions/questions. However, the nurse continued to ask her questions that she couldn’t answer accurately.

Burnt face and our trips to the ER at a Toronto hospital
Prior to my mother’s ovarian cancer diagnosis, her face and neck looked like it had been burnt. My mother told us that she’d been on the subway and “the man said not to tell anyone about being sprayed in her face.” None of this made sense since she hadn’t been on the subway and had no way to get to the subway. At the same time, we were really scared because we had to consider the possibility that someone had harmed her. The face “burn” happened two other times during the next year and it was determined eventually that the changes to her skin were associated with her cancer.

On the advice of the medical personal at the retirement home, we took my mom to the emergency room (ER). My mother got dressed to leave, but she couldn’t fasten her jeans. She was a petite person but her jeans were suddenly too small. Her stomach was extremely bloated. At the hospital, after a few hours, we saw a young resident who spent a lot of time looking at my mother’s stomach. When the senior doctor came in, he ignored my mother and dismissed her heavily bloated stomach as something that ‘sometimes happens to elderly people.’ He didn’t acknowledge her or speak to her once. She was completely aware of this. The doctor prescribed a cream for her skin and we left.

Two days later, my mother saw her regular doctor. He told us to take her back to the ER and have them look at her stomach. When I registered my mother, I made it clear that she had dementia. Due to concerns about the H1N1 flu virus, we had to wear face masks and patients were allowed to be accompanied by just one friend/family member. This situation was a huge challenge for my mom. She couldn’t understand why she had to wear the mask and she was nervous and hyper because she was in a strange place.

I had to constantly re-explain the situation. There were roughly 25 people in the waiting room and we waited over 7 hours. I couldn’t leave my mother to go to the washroom or get food. She kept asking me to take her home. I asked several times if she could be seen, but I was dismissed. At the seven-hour mark, I became desperate. My mom kept trying to leave and she took her mask off constantly. She kept trying to wander down hallways and go places where she wasn’t allowed. It was utterly exhausting. There was no understanding shown by the staff. Nobody seemed to understand the stress this confusing situation put on my mother or on me as her caregiver.

ER at a Toronto hospital
Shortly after seeing the doctor, my mother was admitted to the hospital. There were no beds, so she stayed in the ER for two nights. I stayed up with her the first night.

My mom was given a sleeping pill at around midnight. She finally fell asleep so I could regroup for a while. Then, at 3:00 AM, she was woken up and taken for an x-ray. She had to stand up and reach her arms up to hold a device. She was completely exhausted and confused and was unsteady on her feet. My mom had no idea what was going on and had trouble following the instructions. She didn’t understand why she wasn’t at home.

I asked the doctor to sedate my mother so that she’d stay asleep. During the night, she got up constantly and she kept trying to leave. It was exhausting. I was offered no assistance. I felt my mother couldn’t be left alone because, despite having told everyone I dealt with about her issues, nobody seemed to understand. I understood that medical personnel needed to ask my mother questions about how she was feeling. However, she was constantly asked questions about her medication and her medical history; all of this was listed on an information sheet I’d given to the hospital when she was admitted. I kept explaining that she couldn’t accurately answer those questions but the message didn’t get through. Also, I didn’t want to say this in front of my mother because she felt she could answer the questions. It seemed impossible to find a balance where she was treated with dignity and respect along with an understanding that questions about her health history needed to be directed to me.

My mom was still in the ER the second night because a bed had no yet become availabe. I was too exhausted to stay again. My sister had cancer and was very ill at this point (she died 6 weeks later). I stayed as late as I could and my husband and brother both dropped in for a while.

Ovarian cancer
After two nights in the ER, my mother finally got a room. Again, I told every doctor and nurse that I dealt with that my mom had dementia and that her short term memory was severely impaired. Despite this, she was constantly asked questions that she couldn’t answer. Nobody seemed to understand her dementia.

When mom was sent for a CT scan, technician raised her voice to my mother several times. I heard this from outside of the room. My mother wasn’t capable of following the instructions. She was in a constant state of confusion. She didn’t know where she was and she had no concept of what was happening.

She pulled her IV out at least 6 times. She pulled out two catheters. She tried to climb over the bars on her bed constantly. I was so frustrated at the lack of understanding of her challenges. Someone from patient relations told me to write “Dementia” on the board over her bed. I hated this idea but did it. However, it made no difference. I felt like I had to be there at all times.

One day, my sister went to visit and found a nurse yelling at our mother. My mom was in the hallway, confused. The nurse was telling her to get back to her room. These instructions meant nothing to my mom, since “her room” was her room at home, in her mind. My sister lodged a complaint against the nurse. The woman sharing the room with my mother also had a cognitive impairment. This woman was restrained without permission. Her daughter was a nurse at another hospital and she lodged a complaint with the College of Nurses.

When it was confirmed that my mom had cancer, she was moved to a different room. She had a lot of pressure on her bladder and bowels and began to have some continence issues for the first time in her life. She had severe diarrhoea in the bathroom and was on the floor, trying to clean it up. I called a nurse to ask for help. A Personal Support Worker (PSW) eventually showed up with a diaper, walked in the bathroom and, with the door open, said to me, “Does she need her diaper changed?” There was no understanding or sensitivity to the fact that this was a devastating moment for my mother. My mother didn’t understand why her bowels weren’t working properly and she didn’t understand why a stranger would try to put a “diaper “on her.

Palliative team at the retirement home
Once my mother was released from the hospital and returned to her home, a palliative care team (a nurse and a doctor) from the a hospice began visiting her. They were kind, patient and respectful. They were able to bridge the gap between asking my mother the questions she could answer while understanding that I had to supply other information. It was an absolute pleasure dealing with them.

Personal Support Workers (PSW): Although there was one worker who developed a good relationship with my mom, in general, the PSW team was extremely frustrating to work with because most had no concept of dementia. The workers needed to speak to my mother and try to develop a relationship. They sent different people all the time. My mom was confused and often wouldn’t let the workers in to the room. Some of them would walk in her apartment and ask her if she wanted a shower. They never understood that they needed to try to build a relationship with her. They stopped trying after a few weeks. Because she was in a retirement home, the PSW agency insisted that they could not make 3 separate visits a day. They wanted to go in two hour blocks. My mother didn’t need 2 hours of assistance. She needed help getting up, showering and going to bed at night. Her needs didn’t fit their model, so her needs were not met.

Palliative Care at a Toronto hospital
My mother moved to palliative care in June, 2010. The palliative care unit was a nightmare. I was very hesitant to put my mother in their care because of our previous experience at the hosital. I spoke to the head of nursing at length, to discuss my mother’s issues. The hospice team felt the palliative ward would take good care of my mother.

I had gone to a hospice in Toronto to see if it would be appropriate for my mother. The hospice was located in an old home and there was just one room on the main floor. I was concerned about the stairs. My mother was quite mobile when she first went to palliative care and I didn’t feel she’d be safe at the hospice. There wasn’t a facility that could meet her needs so I decided to go the hospital. It was more accessible for me.

My mother was initially put in a room with someone else. She used the other woman’s toothbrush and personal supplies and my mom kept asking me who the other woman was. The other woman’s spouse stayed with her most of the time and my mother thought there was a man in her bedroom. Every time a sound came from the other bed, she would say, “hello”, thinking that someone was in her home. After a few days, the other woman was moved to a private room.

In the first week, the staff kept asking my mother if she had a bowel movement. She kept saying no (and she didn’t like the question). Instead of speaking to me or the cleaners or the PSWs, they took my mother’s word that she hadn’t had a bowel movement in several days. Of course, she had no way of recalling when she last had a bowel movement. My mom was given a laxative. I went out for a coffee break and my aunt found my mother in the bathroom, where there was excrement all over the walls and on the floor. My mother was on her knees, covered in feces, trying to clean the bathroom.

I told every doctor, nurse, PSW about my mother’s dementia. I tried to explain her challenges. Every time I felt I’d got someone to understand, the shift would change and I’d have to start all over again. There were some wonderful individuals who worked there, but there was no communication between staff members. Nobody seemed to be overseeing my mother’s care.

When I’d tell people that my mother’s memory was worse than usual, my concerns were dismissed. I was usually told that that’s what happens with dementia. I found this very frustrating because my mother was an individual and I knew her challenges very well. My purpose was to help the staff understand what her specific challenges were but there didn’t seem to be any interest in this.

I had to constantly explain that my mother would not ask for pain relief, that she couldn’t rate her pain on scale of 1-10 and that staff needed to look at her face and observe her to see if she was in pain. I did this for 9 weeks but the situation never improved. It was clear to me, on multiple occasions, that she was in pain but it was rare that any of the nurses noticed. When I was with my mom, the staff pretty much ignored her. The weekends were the worst. Often, new staff worked those shifts so everything fell apart every single weekend.

I was told that my mother was getting a new roommate. I told the nurse that that would be a disaster and that my mother needed a private room. She was completely confused and putting another person in the room would only worsen this. Thankfully, my mother was then moved to a private room.

Despite there being a family member at the hospital for 10 to 14 hours each day, the hospital still wanted me to hire a minder for my mother. I refused. When a family member was there, staff rarely even looked at my mother. With a few exceptions, we fed her, helped her to the washroom, got her drinks, walked her around, helped her dress, etc. When she was mobile, we walked her for hours. She was hyper and couldn’t relax. She had no attention span and constantly asked to go home.

The hospital kept telling me that they could care for my mother. I felt that if a family member was there for 10 – 14 hours each day, the hospital could care for her the rest of the time. Also, our previous experience with the PSW agency was very distressing. My mother needed consistent care. Hiring someone from an agency, sight unseen, wasn’t what we needed. I was astounded that they seemed to have nothing in place to deal with people with dementia. The palliative floor had a social worker but she offered no support. I think it was clear that we were a family in distress. It was incredibly disappointing. In addition to dealing with my mother, we’d just lost my sister. The strain was overwhelming. In retrospect, if I’d had more support, I may have been able to find someone suitable. I felt like I spent every minute of my day trying to get people to care for my mother. I had nothing left.

Staff would get very frustrated with my mother for going into other patients’ rooms. It was this situation that finally got her some personal attention; someone began to sit with my mom when a family member wasn’t present. One of the nurses angrily told me that my mom had removed a vase from another patient’s room. She seemed to think my mother had stolen the item. She had no concept that my mother was confused and thought the item belonged to her.

We eventually had a meeting with the care team and they assured us again that they could care of my mother. Things were great for almost a week. They assigned a wonderful PSW to my mom and it took a lot of stress off of us (me, my brother, two of my aunts, two of my cousins and my husband were there regularly). The PSW had other patients but she checked on my mother frequently. I was actually able to spend some time with my kids. However, on the weekend, nobody knew anything about this arrangement. A few days later, the PSW stopped spending extra time with my mother. No explanation was ever given.

After almost 8 weeks of trying to work with the staff at the palliative care unit at the hospital, I gave up and decided to move my mother to a hospice. I felt that my mother had been abandoned. There was almost no interaction with the staff. My family seemed almost completely responsible for feeding, hydrating and caring for my mother. Her pain wasn’t properly managed unless we were there. She would sometimes moan in pain but by the time the nurse came to check her, she wasn’t moaning so they’d conclude she didn’t need medication. One day, during her last week there, her regular medication still hadn’t been given 45 minutes after it was due. Almost no one spoke with her.

One weekend morning, I got there and was told she’d fallen twice. She fell out of bed and then fell on to the gerichair, where she was found. All of this was mentioned in passing and nobody gave us details until we demanded them. My mom was drugged and weak but the only thing they could do was put an air mattress on her floor next to her bed. She wasn’t safe. Every weekend was a disaster because often staff, from other areas would work in the palliative unit. Again, I had to explain that my mother would never ask for pain relief. She had to be observed. Our relationship with the medical personnel completely broke down. We had no faith in them. Luckily, there was a room available at another hospice. My mother was much less mobile now so I felt that she’d be safe there. We moved her there on July 31st.

Hospice
Hospice care was wonderful, caring, inspiring. It was everything that the hospital wasn’t. The people who worked at hospice took care of our entire family. They talked to us about our mom, our personal struggles with her cancer and her dementia, and our bereavement over losing our sister. They brought us soup and made us tea. They were the only people who seemed to understand how hellish this entire experience was for our family.

My mom stayed overnight at hospice and I went to see her early the next morning. I almost started crying when I saw she’d been dressed in a pretty nightgown. It meant so much that to see that they cared enough to do that for her. They combed her hair and spoke to her every time they entered her room. They explained everything to her. Everyone was kind.

My mom died 8 days after she moved to hospice. My brother and I stayed over the last four nights. We were cared for and supported every moment we were there. My kids and my nephews were welcomed. My aunts and my spouse were there. All of us were welcomed and cared for. I can’t express how my soul was soothed over the way we were all treated by the hospice staff. I’m so glad that we moved my mother there.

Caring for a patient with dementia requires involving the family. This is essential from time of diagnosis until the end. How can a doctor make the initial diagnosis unless the individual is so ‘disconnected’ that they can no longer hide their condition?

Toward the end, she was unable to use the correct utensil when eating. She couldn’t distinguish shampoo from deodorant or toothpaste; everything was confusing for her. Despite all of this, she always knew what she liked. The elderly, including those with dementia, are not generic. They are as diverse as any other group. My mom retained her personality to the end. I was always trying to make people understand that even though her memory was poor and she couldn’t always give the right answer, she still had feelings. She still mattered. She still had opinions and preferences. The lack of understanding of this, I think, was the biggest downfall in her medical care.

A Few Last Thoughts

1. If my mother’s family doctor had done some simple memory tests with my mother, as part of her yearly physical, it would have been very helpful. Then, there would have been a baseline to use for comparison each year; seniors who live alone need extra attention at their yearly physicals

2. Once it had been determined that my mom had dementia, there needed to be a way for every medical professional she came in contact with, to be aware of this

3. How can a person with dementia, who lives alone, manage medication?

4. Medical personnel need to understand that there are degrees of dementia; my mother needed to be treated with respect and dignity but there were times when she was simply incapable of providing the information asked of her

5. When a patient with dementia is registered in the ER, staff must ask questions to understand the patient’s level of impairment; ideally, the following questions should have been asked:

a. Is she capable of answering questions about her medication?

b. Is she capable of answering questions about her medical history?

c. Does she wander?

d. Is her dementia apparent?

e. Is she aware she has dementia?

6. ER staff, at registration, needs to understand how stressful it is for a caregiver to stay with a dementia patients for hours; I was unable to leave my mother alone, yet this didn’t affect when she was seen

7. ER staff gave my mother sleeping pills and then woke her up for an x-ray; we needed communication amongst staff members because if she was scheduled for an x-ray, she shouldn’t have been given a sedative

8. We needed a balance where my mom was treated with dignity and respect along with an understanding that questions about her health history needed to be directed to me; ignoring her wasn’t a solution, she had a part to play in all of this and her feelings mattered

9. There needs to be an understanding that a patient with dementia is still a valuable person with feelings, opinions and preferences

10. We need a new term for adult diapers; I referred to them as disposable underwear so that my mother would use them, she couldn’t understand why she would need a diaper but disposable underwear made sense to her

11. When someone becomes incontinent, they are experiencing a loss and it can be very upsetting; hospital staff should be sensitive to this

All stories, End-of-life care, Degenerative disorder  


  

 

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