Dear Mary,
Both of my parents are in their late 80’s. My Mother is very physically disabled and her mobility is very limited. She is also beginning to show signs of dementia. My Dad is suffering with cancer. For the most part, he has been taking care of both of them in their home. He has been doing the shopping, making their meals, driving them to appointments and managing their bills. Last week however, everything changed. He was rushed to the hospital in great pain. He has needed to stay in the hospital this week for treatments. We expect that he will be released within days. Here’s the problem. He says that he is so tired, so weak and so burnout from his caregiving duties that he refuses to go back home. He quite likes not having to take care of his wife of 46 years, not shop, not cook or clean anymore. My mother is not willing yet to leave her home. She wants her husband back home, so that they can be together and be independent. They do have 3 of their adult children (including me) who live quite close by and can come and stay with Mom, but only for a few hours at a time. We all work and most have kids still at home. Mom cannot be left alone at all anymore. In one week, we have all felt the pain of the change in their household. We are all tired, worried and not sure what to do. Is my Dad being selfish to refuse to go home? I think that this whole thing is crazy and out of control. How could all this happen in one week?
Ben
Hi Ben:
I am so pleased that your Dad will be released from hospital soon! I think that you have to step back for a moment and look at all the things that you have to be thankful for. Be glad that your Dad is well enough to be released from hospital soon, be glad that there are family members who can help during this crisis and mostly be thankful that your Dad is honest with what he feels, what he needs and mostly what he is capable of doing. This crisis did not all happen in one week, it has been silently building over time. Their health has been declining and declining health means that things will change. Families usually only change, when a crisis occurs. Rarely do families plan well or in advance of a crisis occurring. You may have not noticed the toll that your Dad’s caregiving has affected their lives and his own personal health and well-being, but trust me, it has. Your Dad cannot be the caregiving anymore! He knows it, you now need to accept it!
Your poor Dad is just done. I bet he has worked very hard while also being sick, to care for your Mother. He is telling you that he cannot do it anymore – best you really listen to him now. He cannot be ill, maintain a household and be a full time caregiver. Enough is enough already!
Perhaps one of you can take him into your home. This would keep him with your family, stay engaged in society and give him some quite time to feel better and safe. Forcing him to go home is the most selfish thing you could do. Find a safe and loving place for him. As for your Mother, it is time to really start to think how to best help her. Be prepared to help her more than you ever have. Be prepared for her to be upset and not completely understand what is happening. This change / crisis will be the hardest for her to deal with and understand. Be prepared for her to fight for her independence. At least for the short term, assume that you will all need to be part of a “circle of care” for both parents. Create a 24/7 schedule with the help of family and friends. This may be the time to hire in-home help to fill the gaps when your family cannot be there. Mostly importantly, you need to work towards a long-term sustainable plan for both of them.
I can remember when we were struggling in our family with how to best help my parents and where they would live when their health was quickly declining. It is really a hard thing to tackle and manage. The stress of change can be overwhelming. Things happen so quickly that you barely are able to breathe, let alone think. Be guided by both your head and your heart as you help shape their futures. Be careful to be respectful of their ideas, needs and wants and do as much as possible to accommodate their wishes.
Mary
Hi Mary:
Thought I would give you an update. My Mom is now in a long term care home and my Dad has just moved in with my sister. We are now trying to figure out who will take care of him while she is at work. For now, things are ok, but he does need someone with him all the time. My Dad is ok with all of this, we listened to him and made it possible for him not to go home. My Mom just wants to see her husband again – we plan to take her for a visit to my sister’s home this weekend!
Thanks for your help
Ben