Dementia (and the fact shes 95 years old) are taking over a grandma I still love but don't really know anymore. She has lived with my aunt for 2 years, but was on her own still in her own house. Pretty Cool! Anyway, my mother her brother and his wife and the aunt she now lives with are all local and help out. Thank goodness! One sister lives 4 hours away and comes when she can. Here's the problem, taking care of someone weather it be terminal, age related, or whatever is by far the most emotional, physical, and non routine work ever! I have cared for cancer patients and spent nights (Sleepless) and understand to some extent what my aunt is going through. The difference is I went home whenever needed got refreshed then went back. My aunt, even with help, doesn't get that luxury. Often people tend to give opinions on how our care could be better(not from a professional) how were to stern, or my favorite, why are we laughing at her. Heres the deal, every person and situation is different and finding the groove that works for all caregivers involved can be hard but with support, compassion, and humor I find this to be the greatest job ever! My aunt is doing wonderful and yes, gets frustrated on the no sleep, asking same question over and over, or clean up every 2 second days but is a trooper. I might get a bit of her,leftover, (lets call it) outbursts but know its not personal. If people re not familiar with the down and dirty of how this type of care can be they tend to be very misled on what can or cant work and how and how not things should go. Humor is a tension breaker and a must for us. One of my cousins was very hurt and felt I was making fun of my grandmother, I tried to explain that when she comes up with an off the wall comment or makes a statement that was pulled out from who knows where and I continue on with her and by the end I had to make a comment that usually makes both us laugh, is not making fun of her. She did not choose for this to happen nor to have her mind taken over at times by a cruel disease. For those few short times when we get her back its awesome but more and more shes disappearing. Hard to see this happen! I understand from the outside looking in it looks easy and people must throw in their 2 cents, but for the most part i think most of us doing this type of care have a handle on things and if help is needed we surely will seek it! My admiration and thanks go to all of you who have decided home care is best for you and your loved one. I Thank my family, for all your love and support for grandma! I love you all so much!
It would really be scary not to have help. My hubby sometimes shows signs of dementia(he had a concussion about a yr ago with brain bleed) so it's worry some about what I'm going to face as well. Friends and Church would be my only help because his grown children only wants to come around when "They" need something not when he needs something...but for our area, that seems to be the norm for grown children now.
Keep posting and hopefully we can be your sounding board with some suggestions that has helped us, Hugs and Prayers to all!
Having a companion sitter (tax deductible) for my husband has really helped. I work part-time. Now he looks forward to my coming home.
This site is also a nice virtual support group. Keep coming here. But if at all possible find a local group, too.
Even though I do have some support with my husband and youngest daughter that is still at home....I too feel alone and not always understood. Unless you live it, NO ONE, truly understands the mental and physically toll. I would not do it any differently though. My mom did so very much for me growing up and she deserves to be with me and family. My brother lives 1.5 hours a way and is alot older than myself and has some health issues of his own. Although, really he has never been overly helpful. Even though travel may have become hard for him he and his wife do not even call to see how she is pretty much at all. They came to see her in July and has called once since then. In some respects I am glad she doesn't understand time and or ask about him often...how would I ever explain why there isn't even a call to say"How is mom doing? Tell her we love her and thinking about her." Yes, I am bitter about that but try everyday to let it go.
I also use humor and whatever else to get by. We are not laughing "at" our loved ones. We are surviving! And trying not to cry. I feel that dementia is one of the cruelest diseases there is.
I hope Scared finds some support. Many nursing home or communities also have respite care. Times when you can take some time off. And please find a way to take care of yourself because you can't care for your husband if you are not healthy. And talk to us anytime. I am new to this website but have already read many things that have helped me or inspired me to go on. Thank you to those that offer support, ideas, and just listen! Its priceless!
About the support group -- keep in mind that these are generally run by volunteers and often they are in the midst of caregiving themselves. Be patient with them, and call again if you don't get a call back. A good one really is worth the effort of getting there.
Trust your children to do the right thing, after all, you raised them, didn't you? Asking for their help is not a call to weakness, it is a reach of caring, and allowing them to help you is a gift, not a burden. Think of how you feel when you are able to help others. It is the same for your kids as it is for you. Give them a chance. Tell them what you need and ask for their collective assistance. They will meet your expectations if you set them high enough.
I know you would hate to"lie" to your husband but if you can get away and do the support group or go talk to his doctor by yourself and get those answers it would help you handle him better and feel more in control...though I do not ever really feel in control since the dementia rears its ugly head when we least expect it. That is something you eventually will come to accept and deal with even in a crowd. And find a way to laugh....the other day mom said her daughter's name was Shirley Temple.(I am her only daughter) I came out of her room and told my husband to just call me Shirley! Its sad sometimes because I miss the mother I used to know and sometimes if I don't giggle at the odd things she says or does...I would lose it myself.
Hope this help a little. I just found this site myself after dealing with my mom for the last 5-6 years. Its been awesome to find others that honestly understand!
I was able to tell my husband where I was going when I went to support group. He was pleased that I would take the time to learn more about his disease so that I could support him better. But if that had bothered him I would have made something else up. Really. Do I mean I would actually lie to my beloved husband? Yup. You learn to do what you gotta do, for his sake and yours.
When we saw our neurologist while my husband was being tested a nurse always interviewed me, and gave her notes to the doctor. By the time we saw the doctor together he knew my perspective, and he phrased questions to allow me to agree or disagree with my husbands answers with the least friction. Since your visits are not set up this way I suggest that you write down your concerns and observations and email or fax to to clinic the day before you go. Your husband is not able to present a clear picture. This is Not Your Fault. Having a clear picture is important for the doctor in treating him.
I am so, so sorry you are in this dreadful position. You sound strong and resourceful. I'm betting you will do a wonderful job of caring for your husband.