We are so thankful to Teresa for becoming a great friend and visitor to Ralph, she has made such an impact in his life and vice versa.   Ralph said he is extremely grateful for the work our team is, and will be doing.

Ralph said he enjoyed being interviewed by Jessica and Teresa and mentioned he was lucky in his career to find a job that was based on talking.  He said he never learned to be quiet!   Ralph had no stage fright and that was due to his mother.   His mother would put him into every talent show, starting at age 4 or 5.   Ralph lectured as a professor and became very involved in radio. Many times Ralph was on live camera or open microphone, on call in shows, where he said “you have to be able to say something that sounds sensible without any warning”.  He said “a good interviewer helps too of course and said thanks are due to Jessica and Teresa”. 

Ralph is brilliant and really had an amazing life.  We are so grateful he was willing to share his life story and legacy with us.  

He was very lonely and didn’t feel valued until we got him a volunteer phone companion (Teresa) during the pandemic and it has changed both of their lives.  They have a very special bond now and are like family. Teresa loves spending time with Ralph and says he is so interesting, kind, and funny.    Sometimes this is all some seniors need is this one-on-one connection and to feel valued.  

Thank you, Ralph for sharing your interesting life and perspective on aging with us!  

OUR LOVE AND A DEMENTIA DIAGNOSIS THAT CHANGED OUR LIVES.

 

My Love, a dementia diagnosis, and how our life changed.

Names have been changed for anonymity.

Donny and Kim have a beautiful 58-year love story.  When I met with Kim, she told me that, although all marriages have challenges, their marriage had more good times than bad.  Kim said that they made each other laugh every day.  Laughter, support, and kindness were the things that kept them together for so many years.  They had a lot of fun together and really enjoyed each other’s company.

Kim still lives in the house they built together 25 years ago.  It was their dream home and built with love.    She said there are so many wonderful memories of family gatherings in their home.

It was great building the house together and the whole family helped. After living there for 25 years she still feels Donny there and that is why she stays in their home.

Kim’s favorite memory of the house was standing together with Donny in the living room before the roof was on and looking at the sky.  One of her grandchildren was also born there.   Donny loved to work on machines in the garage and loved to ride his horse.  He would go out riding and many times the horse would come home before Donny because he often got bucked off, but he always got back on the horse!

Donny was a very loving father and a wonderful grandpa.   They both loved having the grandkids over.

Kim said what she loved the most about Donny was his great smile, and he was always there for her.  He was warm and caring and they loved to cuddle.

Kim said it was about 3 years ago when Donny was in his mid-70’s that things began to change for him.   He was not the same.  Donny started to forget where he was going and slowly, he did things that were not like him.    The kids noticed the changes more than Kim.

Donny’s decline was a slow process.   He would leave their home and started to wander on busy streets.   Then strangers would bring him home after he had wandered away from the house.   He would hide on Kim in places so she could not find him.   It was concerning that he could not seem to do the things he used to do.  Kim tried to get him to help her paint a room, but he could not remember how to do it. She still did not want to believe there was anything wrong.

The Diagnosis

One of the most challenging things they faced was he started to urinate in the house, and this only got worse with time.  Kim, with the help of her children, took Donny to the doctor to be checked.   The doctor would ask him questions and Kim found herself trying to answer for him.   When they got the diagnosis of dementia, he was 76.  She does not remember being told what type of dementia he had or being informed about resources available to them.  What Kim remembers the most about that day, when they got the diagnoses, was feeling sick to her stomach. Donny still seemed fine to her.  Kim said when she looks back now, she thinks she just did not want to believe it was true. Their dreams changed that day.

Kim said Donny never responded when the doctor told them; he just sat quietly.   She said he was not talking much then, and he did not understand.    She said she was not told what to expect.   Kim said the family eventually called a social worker to get help and get some resources.  She also mentioned that financially it was difficult, and they had to use their savings because they did not qualify for many resources.    Eventually, Kim and Donny had to separate to be able to afford care for Donny.

Kim said she had talked to a lot of people going through the same thing and she heard some awful stories about care, and it frightened her.

Kim started Donny in day classes for dementia clients and he loved it.   She said the staff running it were amazing and he made many friends.   Donny seemed to really enjoy the program.

When Kim came to the realization that she would need to place Donny in a care home, she went to his day class and they found a place for him right away.    She was surprised the transition was so fast.   She knew she had to do it because he was peeing in corners of the house. He was having such a hard time and he just could not hold it anymore.   He had accidents in the bed, and Kim would clean him up, but that was getting too hard for her too.  Donny would get angry when she pointed things out to him.  It took her awhile to realize how bad it was.

Kim said it was awful to leave him in care and her heart broke to do it.  At first, she had a great deal of guilt, but she knows it was the right decision.   She misses him but she knows he is safe, and she could not do it alone anymore.

Before all of this happened, Kim had put Donny in a place for one week for respite.   She said it was so crowded and she was so scared that is where he would get placed.   For the week Donny was there, she never saw visitors or staff around and so many of the residents just sat with their heads down.   She saw someone walking around naked.  She said she could barely walk down the hallway because it was so sad.  So many people just sitting with their heads down and Kim was so scared that this would-be Donny’s life now.

Kim was relieved when she found out where he was finally placed. He went on lock down right away because he would try to wander away.   At first, he tried to get out of the building, but he no longer tries to leave.  Kim said there is a courtyard, so if he needed to walk, he could go out.  He is better about peeing in corners, but he has trouble controlling his bowels.   Donny is wearing Depends now which was another hard transition.  Kim said one of the issues they face is when he must go and if no one is around, he ends up going in his clothes and diaper because he cannot hold it. He is embarrassed by this.

Kim says Donny often ends up in different people’s clothes and she is not sure, but she thinks staff take his clothes and give them to others who do not have enough clothes.   Kim has come to visit and found her husband in someone else’s clothing. One time he was in someone else’s shorts that were too big and were being held up with rubber gloves as a belt, and he was freezing.   She said many times his clothes go missing and she needs to replace them.  She understands there is short staffing, but said his name is on all his clothes.   Kim said she doesn’t want her husband to dress in rags and dirty clothes and be cold.  She felt his regular cleanliness had declined with COVID-19 like shaving and having clean clothes on.   Throughout Donny’s life he was a very sharp dresser, and this is hard for her to see.

It breaks Kim’s heart to see that Donny’s dignity is being lost. It appears to Kim that there are other clients that are in similar situations.  She said Donny hated looking sloppy and he always cared about how he looked.   He loved to wear western wear and business suits.  She said Donny is aware his dignity is being lost, but he cannot do anything about it.  At first, they would clean him up and make sure he was dressed the way he liked, but not anymore.  Kim said, we all like to look nice even if we have dementia.

I asked Kim if she had any ideas on how lock down could change and be better for residents and families.

Kim mentioned maybe they could keep residents’ doors locked so things do not get stolen.   Primary designated visitor could have a key to their loved one’s rooms in case they need to go to the bathroom, so they do not have an accident.  Kim said it does not seem efficient to have to run around looking for someone and it is not right for Donny to go in his Depends, if she can help him.

Kim said more staffing is so critical. It would allow them to see more of what is going on if they had better staffing levels.  They need to have more time to read the information given to them regarding their residents.  She finds many of the nurses and aides just do not have time for residents, or they do not have the patience or time to talk to her.  They are always rushed.  Kim feels that she is his wife and should be able to take him to the courtyard.

She does not feel she has a voice to share her ideas or her concerns regarding Donny’s care.  No one seems to have time for her.  She is happy for the most part about Donny’s care, but sees that things could be so much better with some simple changes.   Kim said she often feels intimidated by the nurses and does not feel welcomed by most staff to be able to talk about issues.  She said it is so hard to find someone who is friendly.

She also feels there is not enough training for staff.  She has seen staff trying to force feed residents and they do not seem to have the patience or the training.  She feels if there were more people around maybe residents would not try to get out of their chairs.  Kim feels it is all about money and profits and they are so short staffed.   Staff would feel better too and be more engaged if there was more for residents to do and better training.  She feels they would feel more like a team if they all worked together.

Impact of COVID-19 on our life.

When COVID-19 hit, she said she just got a phone call and they said she could not go see him anymore.   There was no counselling or help.   The messages kept changing.  The first time she could see him was through the dining room window.  They touched hands through the window and kissed each other on the glass.   Kim said it was heartbreaking.

Now that she can visit Donny they cuddle and fall asleep on the couch together.  They have always been very affectionate and now they kiss through their masks!

Donny will ask why he cannot come home with her, but she keeps going even though it is so hard.    Through all of this, Donny is always so happy to see her.

Communication is not great, and she feels it should not be a one size fits all solution.  She understands that in the beginning it had to happen and there was no time to talk to families, but hopefully come winter they can change things, so residents do not suffer so much.

Kim does not understand why all staff can be around her husband but only two family members are allowed.  She said the staff go home to their families and you do not know what they do.  Kim wonders if families would be more careful, in most cases, to be safe for their loved one.  She asked could not the family wear proper PPE, be trained in proper visiting if only one comes at a time.  Having to make appointments is hard as many people work during the day and then there is no one there at night to screen them.  Staff would not normally be safer than someone who loves the resident.  Families do not want to harm their loved one.

Kim feels they should ask the family more about the rules and give them a voice.   She feels dementia lock down should have more activities and more music.  Donny taps his toes and sings to the music.   It does not have to be live music, just on the TV, or even throughout the building more often.

Donny loves singing and getting him out of the unit would help!  They need more fun exercises and to do things that residents like to do.   She also realizes that all these changes may not be able to happen, but she just wants her voice heard.

Kim said many people have no visitors and they are always asking her to sit with them.  During COVID-19 you are not supposed to sit with anyone else except your loved one, but she does sometimes because it is too hard to say no when they ask her.

I asked Kim if anyone asks how she is doing and she said not very often. They are all too busy.   She said the people at the front entrance are generally friendly, but no one notices her when she is on the unit.

Simply Compassion Advocacy Society Thoughts

I share this story because this is what we hear from so many seniors, families, and staff.  This is one unfortunate story among many, of which some are abundantly more tragic. There is a disconnect, not enough training, and short staffing issues.   Communication is lacking; residents and family voices are not heard.   Most families say that this is hard times with COVID-19 but it has been difficult for seniors for a long time.

Simply Compassion Advocacy Society believes that when we come together with families, staff, facility management, volunteers, government, and the community, we can create a more positive culture in senior care.  We are not blaming or pointing fingers, but these are issues that affect us all and can no longer be ignored. We want to see a day where we all advocate for seniors.   Families, staff, and the community can do this together.   We care as much about the staff and families who are caregivers as we do for our seniors.

As a society we want to make sure the seniors have a roof over their head and three meals, but we forget that they are “living”, and the simple things matter too.  Feeling valued, someone to hear their stories, to hold their hands, make them smile and bring them laughter, to let them know they are important, and most important to learn from them.  We will never be able to afford enough staff to do these especially important things.  

These are as crucial as the daily living needs.                      

We encourage staff and families to share their stories and their solutions for change.  It can be anonymous, and we will not name facilities.  This is not to place blame, but a safe place and space to talk about the changes needed to give seniors and caregivers a voice.   We strongly believe that this will be a path to bring about changes that are so desperately needed for our seniors. They deserve to be treated with dignity. This is the absolute least we can do.

To share your story or for more information please contact us at simplycompassionadvocacy@gmail.com