This is such a heartbreaking and frustrating situation.
I've read that the worst kind of stress is when we feel we don't have control over the situation, which is what you were feeling. There are so many things that come to mind Janice, but when I go to write them they all sound trite and placating and not what I mean. Time and again, when I read your articles, I think about how it seems you did the very best you could in a super stressful, bad situation. It would have been a massive challenge any time but many times worse with Covid.
Thank you for sharing your story to elevate our attention to what is important. I am dealing with this exact thing with my Mom right now and your information has given me the courage to ask deeper questions. I want you to know it's making a difference.
Hi Donna, Thank you so much for your comments. It was the most stressful time of my life and the pandemic made the situation so much worse. It has taken a long time, but I have come to know that I did do the best I could at the time. Today, I have other ideas and would do things differently.
As you deal with your Mom and If care agencies are involved - don't believe what they tell you - visit, talk with other families, make your and her requirements heard. But in the long run, they are what they are with a structure, rules, and guidelines. They may say yes, yes - they want the business - but it's a false yes in some cases.
I had a "go-to" person in the memory care facility and she was very helpful and supportive - but she could only do so much.
Janice, your story is heartbreaking and mirrors our experience of having my father enter a nursing after rehab staff decided that he could no longer make any progress. He was mostly well-cared for and the home’s staff said they enjoyed spending time with him.
And then there was hospice care, provided by the hospital system that managed the nursing home. Dad was in hospice less than a month before he died. Hospice said they’d visit every day, especially as he got closer to death. I was expecting hospice to provide more support for the family than they did. They never let us know when they were going to visit my father. The weekend before my father died, the hospice nurse took a long weekend and no one took over for her.
My father died in the wee hours of the morning on August 9. To date, we have not heard anything from the hospice organization.
I probably should have called more and reached out to the social worker and chaplain more, but I didn’t know how to talk to them. It was awkward the one time I met them in person and it would be even more awkward on the phone, which apparently how they preferred to communicate. “If you need anything, just call the hospice number and we’ll get back to you.”
I was expecting a more personal and closer relationship.
Hi Teri, I am so sorry that you had that experience with hospice. This is such an important time for that support to be available.
It's interesting because my experience was the opposite.The memory care facility was not helpful during Dan's final days, but hospice was. This was during the time of COVID and, I couldn't visit him - the facility was on lockdown, but someone from hospice was, they were in constant contact with me, and offered support afterward. They reached out to me, and I was so grateful.
I suppose it depends on the hospice agency's policy. Maybe there are local support groups which would be more helpful, or if there is a social worker at the hospital, he or she may be able to give you some better sources.
Gosh, my heart goes out to you, Janice, and to your family - and of course Dan in his time. There's such immense experience and knowledge that you disseminate in your posts and I am grateful, should I or my family need such advice. Thank you.
Hi Prue, Thank you so much. There was so much I didn't know and had to learn after the fact. The situation was what it was but maybe knowing more would have helped me get through more easily.
The whole situation from start to finish was a complete nightmare, and none of it your fault. None of it Dan's fault. How many thousands of families go through the trauma of this terrible disease every year.? Such a sad thing. You have taken the experience and done something amazing with it, Janice - sharing everything you learned in order to help others avoid as many mistakes as possible. You are a gift.
Hi Sharron, Originally, that was the title of this article "The Memory Care Nightmare," but changed my mind. It's true about how prevalent this disease is - and statistics indicate it will increase. Hopefully, what I learned can help others - as you say. Thank you!!
Heartbreaking. My husband and I talk about this scenario if either of us has dementia. Both of his parents did and we saw first-hand how it is in the facilities. We are dealing with this with our elderly parents, but I honestly can't imagine and don't want to try when it is the love of my life. I am so sorry for your loss and what you have gone through.
Hi Kim, Thank you. Dan's dementia certainly brought up issues I hadn't considered - about who I was, old habits and beliefs, and how to be a single woman.
It was a sad and crazy time. I don’t think anyone was fully equipped to handle the changes and unknown dangers the pandemic brought. And yet, I keep hearing stories of care home residents contracting Covid from workers who were careless. And there is no excuse for them not contacting you when Dan went to the hospital. Thank you for continuing to share bits of your’s and Dan’s story at the end.
Hi Kristi, It was that - a sad and crazy time. The facility was keeping residents safe until Thanksgiving - three years ago. Someone went home to celebrate with family and brought COVID back to the floor. It went through the memory care community like wildfire - both staff and patients were affected and several residents died. I want to blame them - someone, but they were doing their best. His special staff friend wrote me a note and expressed her deep sadness at the turn of events. So, I know it hurt them as well.
This is such a heartbreaking and frustrating situation.
I've read that the worst kind of stress is when we feel we don't have control over the situation, which is what you were feeling. There are so many things that come to mind Janice, but when I go to write them they all sound trite and placating and not what I mean. Time and again, when I read your articles, I think about how it seems you did the very best you could in a super stressful, bad situation. It would have been a massive challenge any time but many times worse with Covid.
Thank you for sharing your story to elevate our attention to what is important. I am dealing with this exact thing with my Mom right now and your information has given me the courage to ask deeper questions. I want you to know it's making a difference.
Hi Donna, Thank you so much for your comments. It was the most stressful time of my life and the pandemic made the situation so much worse. It has taken a long time, but I have come to know that I did do the best I could at the time. Today, I have other ideas and would do things differently.
As you deal with your Mom and If care agencies are involved - don't believe what they tell you - visit, talk with other families, make your and her requirements heard. But in the long run, they are what they are with a structure, rules, and guidelines. They may say yes, yes - they want the business - but it's a false yes in some cases.
I had a "go-to" person in the memory care facility and she was very helpful and supportive - but she could only do so much.
Thank you Janice.
Janice, your story is heartbreaking and mirrors our experience of having my father enter a nursing after rehab staff decided that he could no longer make any progress. He was mostly well-cared for and the home’s staff said they enjoyed spending time with him.
And then there was hospice care, provided by the hospital system that managed the nursing home. Dad was in hospice less than a month before he died. Hospice said they’d visit every day, especially as he got closer to death. I was expecting hospice to provide more support for the family than they did. They never let us know when they were going to visit my father. The weekend before my father died, the hospice nurse took a long weekend and no one took over for her.
My father died in the wee hours of the morning on August 9. To date, we have not heard anything from the hospice organization.
I probably should have called more and reached out to the social worker and chaplain more, but I didn’t know how to talk to them. It was awkward the one time I met them in person and it would be even more awkward on the phone, which apparently how they preferred to communicate. “If you need anything, just call the hospice number and we’ll get back to you.”
I was expecting a more personal and closer relationship.
Thanks for sharing your experiences.
Hi Teri, I am so sorry that you had that experience with hospice. This is such an important time for that support to be available.
It's interesting because my experience was the opposite.The memory care facility was not helpful during Dan's final days, but hospice was. This was during the time of COVID and, I couldn't visit him - the facility was on lockdown, but someone from hospice was, they were in constant contact with me, and offered support afterward. They reached out to me, and I was so grateful.
I suppose it depends on the hospice agency's policy. Maybe there are local support groups which would be more helpful, or if there is a social worker at the hospital, he or she may be able to give you some better sources.
Gosh, my heart goes out to you, Janice, and to your family - and of course Dan in his time. There's such immense experience and knowledge that you disseminate in your posts and I am grateful, should I or my family need such advice. Thank you.
Hi Prue, Thank you so much. There was so much I didn't know and had to learn after the fact. The situation was what it was but maybe knowing more would have helped me get through more easily.
The whole situation from start to finish was a complete nightmare, and none of it your fault. None of it Dan's fault. How many thousands of families go through the trauma of this terrible disease every year.? Such a sad thing. You have taken the experience and done something amazing with it, Janice - sharing everything you learned in order to help others avoid as many mistakes as possible. You are a gift.
Hi Sharron, Originally, that was the title of this article "The Memory Care Nightmare," but changed my mind. It's true about how prevalent this disease is - and statistics indicate it will increase. Hopefully, what I learned can help others - as you say. Thank you!!
Heartbreaking. My husband and I talk about this scenario if either of us has dementia. Both of his parents did and we saw first-hand how it is in the facilities. We are dealing with this with our elderly parents, but I honestly can't imagine and don't want to try when it is the love of my life. I am so sorry for your loss and what you have gone through.
Hi Kim, Thank you. Dan's dementia certainly brought up issues I hadn't considered - about who I was, old habits and beliefs, and how to be a single woman.
It was a sad and crazy time. I don’t think anyone was fully equipped to handle the changes and unknown dangers the pandemic brought. And yet, I keep hearing stories of care home residents contracting Covid from workers who were careless. And there is no excuse for them not contacting you when Dan went to the hospital. Thank you for continuing to share bits of your’s and Dan’s story at the end.
Hi Kristi, It was that - a sad and crazy time. The facility was keeping residents safe until Thanksgiving - three years ago. Someone went home to celebrate with family and brought COVID back to the floor. It went through the memory care community like wildfire - both staff and patients were affected and several residents died. I want to blame them - someone, but they were doing their best. His special staff friend wrote me a note and expressed her deep sadness at the turn of events. So, I know it hurt them as well.