Goodmorning. I haven't posted in a long time, but read daily and truly respect all the experience, guidance and support read and personally received. Thank you to all.
My mom was in a secure assisted retirement living space for 3.5 years. She started to decline in December of 2011 and I had her moved up the priority list for a nursing home. She has frontal dementia and was in the late middle stage at that time and was beginning to fall and was incontinent completely. She had a walker at that time.
In May of this year, mothers day, she had a stroke. She was lethargic, couldn't speak and had a few falls prior to my getting there and having her taken to the hospital. We were in the hospital for a week. What a disaster! In Ontario we work with ccac and due to her stroke and now moving up to late stage of dementia I was able to have her put on the crisis list to move to my choice of nursing home immediately when a bed became available. Until then, the nurses would do what they could on her retirement floor and I got red cross care in the am and late pm daily to help with her care. She was now in a wheelchair and was not speaking, and had to be fed some days or encouraged to pick up utensils and eat. I am greatfull for their care, but knew it wasn't enough, but was waiting.
She is now in a wonderful nursing home! We got the call and I was able to move here August 7th. I know the move could set her back farther and is totally confusing for her, but she needed more care. She is doing well. The nursing and staff love her and she is involved in daily activities to keep her busy and entertained. She is still in a wheelchair but they are working with her to see if walking is possible. They are providing wonderful care.
I am still working full time in a school, and have been off all summer and visiting mom every other day. But once I get back to work in September it will be harder. Boy, that sounds so insensitive! I plan on going over on my way home from school. The evenings aren't great for mom as she is more lethargic and confused, at least that is what I have found, so I like to visit prior to her dinner.
I have two boys still living at home and a husband. I will find it much harder to balance all this when works starts again. Mom is living close, about 20 minutes away.
I know I am doing the best I can, but, boy the guilt is terrible! So, my question is how do you know just how much to visit, feel confident in that, and balance your own family life and your personal health! Tough question for sure, I know. I know I know what the answer is, but damn this disease is exhausting both physically but more importantly and sadly emotionally. Mom is only 81 has struggled with this for years and has declined quickly this year.
What a terrible journey for all involved!!!! My thoughts and prayers go out to all of you who are reading this, as you too have been touched by this terrible disease. Thanks for listening and any replies are welcome and appreciated.
The following user gives a hug of support to keaner: aras (08-26-2012)
Sherry, we do what we can while holding the rest of our lives together and have to know that we have done our best. Your Mom is in what sounds like an excellent facility where she is loved and well cared for. You will go enough to make sure that remains so. That is the best you can do.
This disease loves to heap on the guilt. It is a disease with no cure and no effective treatment. We as humans want hope and a way to fix what is wrong. We can't fix this so we heap on the guilt. If we can't fix it we think we need to be there no matter what. If we try to have a life beyond this disease we heap on the guilt. Mom gets worse, we feel somehow responsible and heap on more guilt. In reality we have no reason to feel guilty at all. We didn't cause the disease, can't change the course of the disease, and we have a right to a life beyond this disease.
I visit Mom several times a week. I do not go every day. I try to let Mom have a visitor every other day. If one of my sisters or nieces decide to show up... I get a three day pass! When my daughter needed my help to move her stuff and get ready to go to England.... I was there for her. I missed a visit with Mom and that's ok. Mom was well cared for.
We are responsible for making sure Mom has good care. You have done that. Now it is time to take care of yourself a little bit and enjoy your family. Go see Mom but balance it with your life. And... throw guilt out of the door. That is reserved for situations where you intentionally do have. In this situation you are only doing good
I do remember you from before and it is good to hear from you again. I am so glad your Mom has the proper placement now and she is doing as well as she can. You have gone good... and now need to take care of yourself and your family at least half time!!
Thanks so much for your reply. Your words are of great comfort! Your expertise of experience means a lot to me. Thank you!
This is such a long journey with no manual, so it I extremely important to tap into all available venues of support to gather education, empathy and friendship.
To me, this is one place I find that, amongst a few others.
You are right Sherry... there is no manual. Of all the books I have read nothing compares to real life experiences. The questions we really need answers to are not in the books. Professionals will tell you what may be best for our loved ones but not what is best for us. I wish I didn't have all the experience I have... but if I can use it to help somebody else then it makes it all worth while. Life is a strange place where we get what we are given and not necessarily what we ask for.... and we have to make the best of what we have. Hang in there, balance caring for your Mom with caring for yourself, and you will be just fine
the result of this disease on family members is GUILT. we can only do the best we can. guilt is negative and gets us nowhere. it sounds like the facility is wonderful and making your mom comfortable. hope you can see things more positive than negative but i know how hard that is. hugs to you and hang in there. keep venting it helps.