Dear Frustrated:
You sound exhausted and heartbroken. And no wonder. You are dealing with a very difficult situation and decision. The options you have, keeping Gary at home or placing him in a facility, are both difficult ones. It seems like no matter what you choose to do there will be significant problems for the both of you, significant suffering and concerns including perhaps a sense of betraying Gary, of failing him should you choose to place him in a facility rather than keep him home with you where you feel he will receive better care. Added to all this is your lack of sleep and the fact that the normal time for sleep has now become a time of increased anxiety and vigilance for you rather than rest. Your mind and body are never off duty - day or night - always on high alert. I suspect that even when you do rest it is not long enough or deep enough to be of much help. And when you wake from a fretful sleep, it is to face yet another day of physically and emotionally exhausting care giving - a care giving which is depleting what little reserves of energy you might still have. Sounds like you are on the edge of burning out which would be yet another heart breaking circumstance for you to bear given your concerns for Gary's well being.
I was exasperated to hear your case worker's response to your call for help. I find it hard to believe that a reassesment could not be conducted at an earlier date given Gary's significant deterioration, the toll it is taking on you, and the fact that you said you simply could not wait that long. Unfortunately, the suggestion she did give to you - the trip to the ER - has in fact been the only option some of my friends have had left to them. Some of them, at the point of exhaustion, have taken their loved ones to the ER and in some cases have had them admitted. At least the admission gave them some sense of security and an opportunity - temporary though it might be - to rest and recover themselves. In this province we also have facilities which provide temporary respite beds. I suspect you have the same in your area. These beds can be booked for periods of time long enough for you to have a break and yet still be able to care for Gary. The fact that such periods in a facility are temporary might remove some of the sense of failure you mentioned you would feel from a permanent placement. Should you consider a temporary placement, see if you can book it at a facility close to you if possible so visiting Gary would be reasonably convenient.
I am also wondering if you have access to a counsellor, social worker, palliative care nurse/team who could provide some support for you as you move through these difficult days. If you don't, perhaps your case worker or family doctor might be able to recommend some one to you. My head just goes in chaotic merry-go-round circles when I find myself in circumstances similar to yours. The support of an experienced (and compassionate!) counsellor and/or social worker can be of considerable benefit. I have found their companionship alone is of comfort to me let alone their professional knowledge, skills, and advocacy.
AS for family and rituals, they too often fall by the wayside in the face of your exhaustion and become yet one more disappointment/ loss in your life. I have pretty much let go of everything. I just don't have the motivation or energy. However, some of my friends and family members have stepped in and salvaged some of the rituals which used to be part of our family calendar. I wonder if that might be possible for you. Family and friends often want to hep and sometimes don't know how. Some of my family - sisters - bring Christmas to our house for example knowing I have lost interest in doing so myself. WE appreciate the food and the company, and I appreciate being relieved of the responsibility of having to host a celebration in keeping with the way we used to when my wife wasn't ill. Sometimes, it is so good to have someone else carry YOU for a while. Such times are gratifying for my family and friends too as we are together, and they know they are doing something which is of genuine help. Might not be possible for you in your circumstances, but maybe it is. It might be worth a try.
I'll leave it at that for the moment, dear. I am not immune to the issues that plague you. I vacillate daily on whether or not I should have Sarah placed in a nursing home of some sort. On my bad days, the decision seems easy; on the good days - much less so. I wish I could win the lottery and then keep Sarah home with all the luxuries of care money can buy. I wish there were better nursing homes, and better home care available. In this province there are long waiting lists for both. I wish our government would stop talking out of both sides of its mouth when it comes to health care for people in our circumstaces. My wish list goes on and on some days.... The best I can do is to offer you my long-distance support and affection. These are difficult, dificult times for the both of you. Please keep writing. Better to be in the company of friends, than be alone.
JIm