54j Asked March 2011
How do I get over the guilt of leaving my hubby with Alzheimer's Disease for an hour or two, every two weeks?
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I have a sister in nursing home I need to visit.
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I understand anger. I have solely looked after my mother for almost 2yrs. I have siblings who live a mile or less from my mother and drive past her house everyday. I used to ask nicely for help, then I began to beg crying for just some relief. I was operated on and was supposed to be on bed rest. But that never happened which caused my recovery to take longer. I still got no help. The only help I could get was my 94yr old grandmother who faithly volunteered to help. But my grandmother could barely get around how could she run after my mom when she started to wonder. I went through so many emotions. Until one day I realized that I was doing this alone and didn't need there help(siblings'). My anger has somewhat left, but I do have bad days once in a while. My parents gave us kids the best of everything in life. I respect that and now I am paying it forward.
There is a local personal care home that my mother knew the owners. When my grandmother was recently place there, the owner asked me if I ever got a break? When I replied no. She volunteered her PCH to help me out when I need a break. This was my lifesaver. I felt so guilty at first, but after a few times I took mom there and she interacted with others and had a good time. I no longer felt that guilt. Mom has even stayed overnite occasionally. I havent taken mom there for a while but thats okay cause I know I have an option when I need that time off.
Every caregiver has there own level of guilt. BUT we all need a breather once and a while. If we hit rock bottom who is going to take care of our love one. We need to be mentally healthly to be a dedicated caregiver. Let the guilt go... Only you understand your specific situation and what you need. I am sure if the roles were reversed you would want you husband to get a break. Don't worry about your kids, they are adults. I would calmly continue to ask even though you'll probably get shut down. Maybe one day they might say yes. I have learned to be as positive as possible and take one day as it comes. You do what you need to do to survive. Fighting with ur kids will only make more tension and stress for you. Thats the last thing you need to add to your plate.
I know you love your sons, however it sounds like they are spoiled. You need their help and they are not there to give you a break.
You mentioned that not only did you and your husband purchase homes for them but you continue to pay their insurance.
This may be difficult for you but it is time that they learn to respect you and their Father and all you have done for them. As a start I would suggest that you stop paying their insurance and advise them that this money will be used to pay for a caregiver as neither of them have the time to sit with their Father while you go out. It is time for a bit of tough love.
I never take my bitter out on him. But I cry a lot and wonder why and where we went wrong raising these boys! Most of what their dad needs is to be with them for a little while. His eyes light up when they come for holidays. wish there were more holidays in the year!
And it never hurts to ask. . . I totally concur with that. However, my partner in care-giving is an angry sister, who doesn't monitor her tone. When she asks her sons to step up, the tone is enough to make me not want to help her. It's a balance between a firm request and a mamby pamby wishing someone would read the mind. But I have found in this whole care-giving journey, along with working as a teacher and school administrator, I get so much more out of people when I make a genuine, firm request rather than attacking first.
The tone of a request is so vital to an outcome. If they don't step up then. . . well, I am just responsible for being genuine with my request and karma will take care of the rest.
And I totally get the frustration, even anger part. I've joined an Alzheimer's support group and an Al-Anon group. Al-Anon is for people who have a friend, colleague, or family member who is an alcoholic. My biggest challenge isn't the Alzheimer mother but the partner in her care who is an alcoholic. And that's a whole other topic.
I meditate, breathe deeply (even in grocery lines), and pray much. God is a great partner on this journey, sister!
But then I'm going to defend myself a little. Yes, of course people should step up, and some just won't - others will when given the nudge. Busy people in particular, myself included, often fail to think of other people's perspectives, and may respond when hit in the face with them. I could not help but think that the kids might really think things were OK and their good intentions were good enough. Most people don't even imagine what it means and what that is like for someone to need truly full time supervision - to not be able to leave a person alone even for a minute.
I have a hubby like that, He is admittedly and incredibly L - A -Z -Y. But, given a specific task request that he really has no excuse for, he will usually do it and not make me suffer too much for asking. And I will admit to getting irritated that I have to ASK when to me it is so obvious what needs done - i.e. the smell from the litterbox. I mean HOW can he just sit there and videogame when he knows he needs some exercise, he sees me up doing laundry, housework, and paperwork at all hours, and he'd like me to get the taxes done or do some other thing with him/for him and has the nerve to ask me whether I got it done or not!! But I have had to learn to ask anyways, and get what help I can, or I'd have had it completely with the lazy obliviousness of it all, a looong time ago.
He folded some linens and put them in the closet yesterday. That's where I'm coming from.
You don't have to be the family referee for one minute. If the kids haven't already realized what you've done for them down through the years, well, that ship has sailed.
Spend your energy on self-care and on finding alies, on finding willing help. . . and not making enemies.
My mom is at the stage now that anyone who smiles and gives her a hug, she kisses and thinks they are family. And well, they are. It doesn't matter if they are blood related or not. She feels their warmth and love. . . and that's what family is!
OK, there's my dos centavos worth.
BUT - You are entitled to be angry. This is not right. The children may not want to face facts, may be busy, may be just lazy, but none of that makes it right for them to neglect their parents. If they go to church they should know this, Don't just let that root of bitterness take hold, instead pray for strength to do what you need to do. It may be that you, and no one else, must be the one to pin them down, have a family meeting, ask them not IF but WHEN they will help in the next 1-2 weeks, and HOW OFTEN they will do it ongoing. You are not their conscience directly, but you can remove the illusion that all is as it should be and it is just fine that the family is not pulling together and ptiching in at this difficult time, but just letting you do it all yourself. And if they "can't" then they can be notified they are chipping in for the respite care that you really feel would be better delivered by familiar loved ones than paid caregivers anyhow. If they are afraid, have them come over and be with their dad while you are in the house doing other things and maybe showing them anything that they are not familiar or comfortable with. If they still manage to shrug it off or find some excuse you can't immediately counter, then maybe the pastor could help. And if all else fails, then NO GUILT over being angry and NO GUILT hiring and paying for respite for you out of their inheritance. Just my $0.02.
Let the guilt go. Guilt doesn't serve any purpose when caring for an Alzheimer's patient. It doesn't!!! Let it go and get creative.
I have a niece and nephew in town and they are sometimes available and sometimes not. . . friends are sometimes available sometimes not. I want available people on my team, that's why we use adult day care and respite care. We are paying out of pocket for these services but they are well worth it.
Again, get creative and let the guilt go. It serves NO purpose.
God Bless
How do I know this? My sister and I have been caring for our mom full time, 24/7, for the past year. My sister has been at the stern for almost three years. We're sailing these turbulent waters.
God Bless you for thinking about me.
There should be lots of women like you: dedicated, compassionate, sharing a little love everywhere they go. Guilt comes with the caregiving territory, that's why it's important to do the best you can with what you have. Make every moment with your husband special so you won't have any regrets and spend the rest of your life wondering "What if?"
I also agree that if he were in a better frame of mind he'd want you to visit your sister and take some time to pamper yourself the way you should.
So go ahead girl! ... Live a little. You've earned it.
-- ED