I would first like to say I am so sorry you are suffering. I have said many times that there are no words to describe this disease. It is heartbreaking to have this and it is heartbreaking to watch a loved one suffer. As we live day by day with our loved one with this illness we watch the changes and feel the pain, both the one with the illness and the caregiver become totally exhausted, emotionally and physically. The love we have for our loved one is what gives us the strength to take wonderful care of them. We have a rountine every day and everyday is a painful struggle. You add on people coming to visit, whether it be family or friends and it makes it even hard, not because you do not love your family and friends but having people over can be very tiring and also emotionally draining especially if you have some trying to suggest that you are not doing things properly. There will always be someone saying oh you should be doing this or you shouldn't be doing that, this is how I handle this, when company come to visit it is lovely I ask them to stay only for short periods of time because my husband gets very tired easily and it is hard for him to talk. When they come to visit some will say can I bring something, I will say if you do not mind he loves a coffee you could bring him one. Some may say is there anything I can do to help, at that time there may be a few little things I need help with and I will kindly say what that might be. Now, when some people say to me maybe you should do this or that I say this, I for two and a half years have not had one full nights sleep, I have been constantly on the go, I take care of all my loved one's needs, I clean my home, I cook, do the laundry, take care of my our family pets, I do breath stacking, right there they look at me and say what is breath stacking, I then say to them okay there you go, I know you are trying to help but you see you do not know what that is and I would not expect you to because you do not live this disease, you stop in for a short period of time, have a visit and you make suggestions of what would be good for my loved one. Now with that said I will say to them the old saying, walk a mile in my shoes and then make your suggestions, you do not know what we do in a day to keep my loved one the best he can be. Do you know how to stand him up when he cannot stand very well? Do you know how to run a feeding tube? There are many questions I could ask. They will look and say no I do not know how to do those things, my comment is well I do know how, and as you can see he is well cared for and loved and your job is do just drop in and love him not suggest what can make things better. We love each other dearly and the last thing we need is someone thinking they know what they need when they are not here to dry the tears that are flowing, not here when they have trouble breathing. I will say as friends and family just love us, hug us because unless you live this every mooment of your life you will never know what we live. Our hearts our breaking, gently put your arms around us not your comments of what one is not doing right or what one is doing right. It is simple just love us.
hope.