This could go under many post, resentment,guilt,tired, etc. I was looking forward to my SIL taking. DH for 3 nights. Our oldest daughter had a baby shower and our youngest was in from DC. The one from DC was staying until this morning. DH was to leave yesterday afternoon. That would give me a night alone with our youngest. She had been home since Thursday so DH had tIme wiTh her. At the shower my SIL wanted to ask me a few things about DH. How he was doing and all. He had walked away from home last week and I have GPS on his phone so it was easy to find him. SIL has the password and knows how to use it. Last year she took him for a few days. They were going to Hilton head. DH's mom goes and SIL husband goes. So that's 3 people to look after him. We'll, on Sunday the day to leave my MIL calls and is having trouble with vent hood above stove. I go over and not a big deal. But she just doesn't think she should go on the trip. She said she would call and let me know later. Then my SIL calls and says that my. MIL is not going and she wants to know if it will upset DH to not go. She doesn't think she can take care of him! It's 3 nights! Her husband was going too. I take care of him 24/7 by myself. They are always saying I know how hard it is for you if you need a break let us know. Well, I really needed this break. I know that they changed their mind because of our talk. Did they think he had gotten better. I am mad. They always tell me we will take him for a few hours go get a manicure or shop. We'll, I have never been one to get manicures and I am not a shopper. I need more than a few hours a couple of months. These are the people who were in denial and took him to revoke my POA after 28 years of marriage. There is still lingering resentment there.
I started crying after dropping daughter off at airport and my DH was very concerned and kept asking if I was ok. For him yes I am. But not really. I kept thinking I want a normal life. I know that no life is normal. I don't just want a few days of respite. I want for DH to still work, golf. I want to be able to work and go to my bible studies and see real people and have real friends. I want my girls to come home and not cry when they leave because they feel guilty for what they can't change. I want to be able to jump on a plane and go visit my daughter in DC and not worry about taking DH or leaving him somewhere.
I am proud of our girls. We walked in the Alzheimer's walk. This was our 7th year. And our oldest daughter is 7 1/2 months pregnant. Not one person in his family has ever walked with us. My mom, sisters, SIL, niece, and daughters always do.
I am sorry I know that we all want these things here. My heart goes out to all of you.
Jackie - My heart goes out for you! This must be incredibly disappointing. I've learned with this disease that you can't depend on people. Hope for the best but be prepared for the worst.
I just finished 7 days respite and it does make a big difference to take a break for Alz world. This just sucks!
Jackie, I'm so sorry you have all this to deal with. This darn AD turns us into worn out hollow human beings. Just keep plugging along. You think it will never end, but it does. When it does you feel surprised. Just keep coming here. We all know. Here are some hugs and more anytime you need them. Carol
Jackie, I understand completely. I want my life back too! I want to go see my grandchildren, and my stepsons children also whenever I want. Like I used to. I don't have problems with my stepchildren. I'm very blessed. They are very supportive but how much can two parents who work full time, with three children under the age of 9, and live an hour and a half away do for me daily. I too want my husband to work, to golf, to ski like we used to. I want to go see real people, real friends for lunch. I don't want to be locked up in this house, this prison. But then I look at my dh and see how he struggles, and I feel guilty for wanting my old life back. I'm sure he wants his back too. It all just seems so unfair, yet I feel like I spoiled brat for crying for what cannot be. Sorry, I just felt like venting too. Hope you don't mind my joining this horrible pity party.
Jackie so sorry the respite didn't work out. the fact that he got lost or left home may be a factor. that means they would have to watch him 24/7 and many aren't prepared for this extra work. sorry to say we see many of our family and friends lose interest in giving any help with this horrid disease. yes its like a prison. but unless you live it most don't have any clue how terribly lonely and isolated it can become. only those of us here in the trenches pre or post know this. maybe you should just step up and tell them how much you need the break. and let them decide. hope it works out for you. divvi
Jackie, Lesson learned, you cannot trust this group of people to keep their word. Vent hood or not...they make the offer but don't really mean it as you have found out. Don't depend on them for anything.
I think, if you can, start to check with the local Alz Assn and see what they can recommend to you for respite. Ours here had grants and means to help defray the costs of having someone come so you can get a break. Even if you can't get away for a few days, getting some kind of in home help for a couple of hours so you can go the library ( if it is open or if you even have one) or to get your hair done, or to go to the park and sit and listen to nature...anything that can help. I finally had caregivers in a couple times a week and they helped with some cooking ( which was a huge break for me) and light housekeeping so that even if I didn't go anyplace sometimes, I could go do something else...someone else got his lunch and mine even, someone else did the dishes, someone else helped with the TV set or DVD for him. It is huge to have even a little help.
We all, at one time or another, have felt the same as you are now, wanting our old life back. This is not unusual..and there is more in store that will make us say that more and more as time goes by and as things change.
It sounds like your DH is a sweetie and he deserves some social activities too.
Lady golfer you are not stealing my vent. I know that we all want our lives back. I am sending hugs your way. I do feel guilty about seeing my DH the way he is. He says a lot of times he wishes he could go to work. I did take him for a Sunday drive, just he and I. He really enjoyed it.
I guess i just do not understand how people can say "oh if I can do anything let me know" then they don't really mean it. Or thy say "I just don't know how you do it you look so tired". Then they say they cannot help because they could not take care of him by themselves. Well, as I said I do it 24/7. I do have a LTC policy. I just cannot bring myself to use it yet. He still knows to much. It has in home care. I know I need to.
Jackie, you need to start using the LTC even if it's on a limited basis. Get him used to having others in the house and doing things for him now. Trust me, it will be a lot easier when you and he require more help in the future. You can transition and be there the first or second time to observe and assist so you feel comfortable with the services provided and how he reacts/behaves. Truly it will help in the long run and there's nothing (unless his policy states it) that requires you to use the care every week or month. Since there are huge differences in how paid caregivers do their jobs and care for heir clients, better to find out now what you like/dislike in paid caregivers so you have a clear vision of the people you want to hire when it becomes necessary.
Find an agency you trust will supply competent. reliable people. That in itself can take some time. Make sure they all have insurance and workers comp for their employees and think about getting an umbrella policy for your home/car. They don't cost a lot and provide an added layer of protection.
Jackie, absolutely use your LTC for some help. I have someone two days a week to let me do what errands I need to do, my doctor, dentist appointments etc. I was terrified to bring someone in, but I had to get out and my dh has vascular problems that prevent him from walking far. Also there is usually a period of time (mine was 90 days) before your policy will begin paying. So you might tell your husband, like I did that while we didn't need anyone now (filblet!) we could use as little as one hour a week to start the process. It gave us a chance to try out different care companions and to use the time against the 90 day eligibility. Also, my husband was dead set against it but I told him it would be such a help to me, would he please try. And he is a stubborn type A former CEO, this was not an easy sell. But he did it for me and we transitioned from an hour to two hours to four and so on. Sometimes the hardest part is making that first step. You won't know until you try. The worst that can happen is that it doesn't work out now but will later on. In the meantime, I send big hugs. I'm sorry it didn't work out for you.
I'm so sorry. I'm still able to leave my dh for awhile. His anger is the big issue now. I hope you try the hour or two out, you may find it helps you and him. That kind of change is good. Love, Bonnie
Jackie, I am sorry you were treated that way by your SIL. Through this journey we find our who we can really count on in our hours of need, and we eventually learn to drop those we can't rely on. Hugs to you
Jackie, I'm with the others above. We have no LTC insurance, but I needed a few hours to myself, even if it is for errands or Dr appointments. Most agencies here have a minimum of 3 hours so that is what I started with. I told DH that she was coming to help me clean. And she did clean, the first few weeks we got all the windows in the house. Then I started going out to do a short errand. Once they got comfortable with each other I could go for longer periods. one day she was here 8 hours while I went to a funeral in NJ.
Four months later I started another person from a different agency on a different day. By then it was no big deal to him when other people are in the house. Good thing! Since he started Hospice on 9/25 our house is like Grand Central Station. He doesn't know who is who, but doesn't object to then.