My dad missed us, and a week later he started to die

Jun 26th, 2020

My dad was admitted to long term care the first week of January 2020. He had moderate to advanced Alzheimer’s and was too much for my mother to manage any longer. He was 91 and my mom 86. We had put our dad on a wait list for LTC 3 years prior as soon as he was diagnosed with Alzheimer’s. We chose a home where there was a retirement home attached so that my mom would be next door so she could visit daily. She was able to get an apartment February 1st. Sounds easy, but it wasn’t quite as easy as it sounds, but we weren’t prepared to separate them as they have been married for 63 years. Another story for another fight for LTC reform.

We thought our prayers were answered. We had to put him on a crisis list for a bed because of his needs and my mom could no longer care for him 24/7. However, the day we moved my dad in was a nightmare. We quickly realized there wasn’t enough staff for my dad’s needs. We almost took him back home that night. CCAC and the home did not prepare us properly. This was one of the top rated LTC homes in Durham Region.

He fell 6 times within the first week, with 1 being an ER visit. The day he returned from the ER I showed up to him sitting in the TV room slumped over almost falling out of his wheelchair again. We were not aware he did not have a proper and safe wheelchair and enough staff to watch the residents. Since that day my mom, sister, brother and I took shifts almost 12 hours per day to supplement his care. We started to back off a little, but still there daily, once we had multiple meetings with administration and the care team and got him a different wheelchair. My dad actually walked a little before going into LTC, but knowing the lack of resources, we thought it best to have him stay in his wheelchair. How sad is that????

Families need to be there because I am not even confident that even the doctor knows what is going on with your loved one. At each family meeting I was not confident that the doctor truly had the correct and full background on my dad. For example, he said he was weaning him off Immovan (a sleeping pill) which he was not even on. My dad took a sleeping pill for a very short time sporadically before going to LTC. Did not even make sense. He said this home had the best care for bed sores. That’s another story for LTC reform. My dad went in with a small one, and still had them when he passed. The home is so lacking in resources that they couldn’t even supply him with a wedge pillow to prop him up to alleviate pressure on one side. We had to provide a pillow. We would show up and it would not be used. The staff would not take the time or know to put it in. It was a constant battle. It was easier to just give him a pain pill daily.

LTC does not have diabetic diets. WHY???? If we weren’t there he would have eaten sugar desserts and high carbs and sugar juices with each meal. I was told even by the Dietitian that they cannot not offer residents desserts when everyone else is getting them. I said “yes you can, would you give someone poison, provide a sugar free alternative”. Yet they would in turn give him an insulin shot? His blood sugar levels started to rise where he had to be given an insulin shot a couple of times. We quickly put a stop to that and had to monitor his diet and were there at almost every lunch and dinner. He never had an insulin shot until he went into LTC. We were told we would have to provide our own sugar-free juice. Seriously? My dad worked hard all his life. He did not have a pension. Had a small business and saved to be able to have a comfortable retirement for him and my mom and he can’t get the basic care. We have to pay extra to supplement his care? What is wrong with this picture?

My dad was aggressive with personal care. The first month in LTC they wanted to send him to Ontario Shores for assessment. We declined and opted for in-house referral. That is a long wait list. The next month the same request was put forth to us. With the COVID it did not happen. Why doesn’t the home have more support for this? Another story for another fight for LTC reform. LTC is not equipped for type of and acuity of residents.

The day we were locked out we thought it would be a chance for us to really back off and give my dad a chance to really settle in without us “helicopter kids” there every day, and even hopefully settle better without my mom. We didn’t realize it would last so long. The messages we were receiving were that he was doing really well. My mom started to go to the window and he would be sad. At least my mom should have been allowed to go in. He teared up when I came to the window and couldn’t understand why I wouldn’t come in. My brother’s videoconference was the same. Even with his Alzheimer’s, he knew us and we were his people. He missed us, and a week later he started to die. At first they would only allow us 1 at a time to go in for 1 hour at a time. We fought for longer. My mom’s side went into outbreak – the patient was actually COVID positive from the hospital, and in the hospital and did not even return to the retirement home. They were not even going to allow my mom to see my dad while he was dying. In the end she was allowed, in full PPE 1 hour per day (3 days) – that is all she got after 63 years with him. I have to be thankful to Wynfield for granting her at least that if that is all Public Health would allow. My heart breaks and I can’t help but to feel so guilty for putting him in LTC. It was not what I expected at all! I truly believe he died much early because of isolation!

Families need to get back in I want to say that the PSW’s at Wynfield LTC in Oshawa on the Lynde Creek Unit are the absolute best PSW’s in the world! They go above and beyond to make our loved ones feel special in the little time they have with them. Those poor staff are worked so hard. There is only 2-3 of them sometimes to 27-30 residents. I have sat in family meetings and there is no PSWs represented. They are the ones that spend the most time with our family. They know them the best. When I wanted to know how my dad was, I didn’t go to the head RN or the RPN, I went to the PSWs. I have seen/heard the PSWs sit with dying patients and cry as if they have just lost a loved one. What support do they get? When my dad passed he could not have his entire family with him. Thank god I was there and he did not have to pass alone. I could not have got through it without one of my favourite PSWs. She walked me through it, held my hand and my dad’s. Kept me calm. The drapes were drawn and my sister came to the window in hysterics that she missed being there and couldn’t come in. The head RN came in 5 min after he passed and told me I had to leave with almost no compassion. The PSW shut the door and told me to sit and take as long as I needed.

I have so many stories that I want to share. LTC needs help and I would NEVER want to send another family member to LTC ever again the way it is today.

Sue G.