At first, the decision to take the Palliative Care Train seems like a relief as you are no longer striving to get places but allowing yourself to be carried more by the “natural” impetus of your loved one. Up to this point we had been engaged in a life and death struggle to get enough nutrition into our loved one. But increasingly everyone was unhappy with this struggle and as her dementia advanced she became more and more obsessed with keeping her mouth clean and with how much she hated the actual texture of food in her mouth. It mattered not whether it was minced food or a smoothie: all things that coated her mouth were now rejected.
The ticket for the palliative care train was to stop fighting and let her do whatever she wanted while we kept her surroundings peaceful and positive. And so, things are a lot more peaceful now that we have started on the palliative care train. It was painful making the transition to abandoning any further efforts to keep her nourished or hydrated. Hard to let go of the nurturing impulse and instead just stay kind, loving and accepting of her state and decisions. But once on the train, it starts to pick up speed, and there is no turning back! So more difficult transitions come and go, such as allowing her to stay in bed all day instead of getting up to be on the couch with her husband. Lots of sadness all around as she abandons the cuddling into him she has been doing for the last month or more for lying peacefully alone in bed. He is hard of hearing and too far away from her to pick up what she is saying – too tired, stiff and old to be getting up and down all the time from the couch, and so he is getting lonelier while she is talking more and more to herself and whomever else she can see… that we can’t.
Then came the bedsores, although the only broken skin is on her big toes. So we have caught up to shifting her around regularly so that her skin can recover, with a tent for the blankets at her feet so her toes will also improve. Soon she will be catheterized because two person transfers are too hard on us and on her for us to be doing them a few times a day. And all the time she is slipping away from us faster and faster. Now it is normal for her to be in bed all day except for 1 or 2 trips to the toilet, normal for her to consume only 100 or 200 calories and perhaps 4-6 ounces of fluids. The train is speeding up faster and faster and our role is simply to ride it now.
She is mostly in good spirits still although she gets grumpy when her husband is not with her. But he needs his breaks too, time to sit and eat breakfast alone, time to read the paper, magazines and books in which he is increasingly burying himself. We have ladies in waiting coming 3 – 4 times a day and that rate is likely to pick up as the nurses get more involved. So instead of being preoccupied with her care, I find myself busy with organizing all these different ladies in waiting: we have PSWs provided by the LHIN for the morning shifts – 3 hours a day, 7 days a week. Then we have hired a couple of wonderful housewives who take turns cooking and hanging out with her giving her little sips of smoothie while they socialize. We have also hired PSWs to put her to bed with a good wash. Finally, the Hub Hospice Volunteers are going to start next week visiting with her in the early afternoon. HRH will have a procession of ladies in waiting throughout her final days and the royal prince consort gets to enjoy some sociability when he prefers, or disappear for some respite and refreshment with the Lady in Waiting holding the fort so that his absence is tolerated.
So being on the palliative care train is better than fighting to keep her alive, but it is certainly not an easy ride. We have been incredibly blessed with the quality and heart of the ladies in waiting who have been given to us. We are blessed with good counsel, the ability to accept it no matter how hard that is and the commitment to see this through so that she is eased off of this earth as graciously as possible. We are also blessed that her dementia reduced hydration has cleared up the fluid in her lungs so that she is breathing comfortably. In fact everything is peaceful, except for her feeling bad about being a burden and feeling unloved and unwanted during her husband’s rare absences. But all in all, this train is functioning well and our house is peaceful, if increasingly sad.
Written January 5, 2019