I don't mind taking care of DH, but limits and boundries are being crossed regularly and I want to scream at him " back off, leaves me alone- you don't need a running narrative on every thing I do"! What do you guys do about setting and keeping boundries? Help!!!
My husband occasionally will shout SHUT UP. Frequently when this happens it's just words. It's not aimed at me who is saying something. Whatever, I immediately say in my best school-marm/mommy voice YOU MAY NOT SAY THAT TO ME. It works. He apologizes, calms down.
However, after 53 years of marriage, very few boundaries exist between us. If I need to intrude on his space to wipe his behind, so be it. If he needs to intrude on my space by asking what I'm doing, so be it. A lot of what comes out of his mouth is muttering, humming, whatever. Now it's just "white noise" for me and I hardly hear it. My daughter, on the other hand, finds it very annoying.
Gypsy2...boy, do I hear you! It is more than just annoying to need to explain every single small detail of what you are doing, why you are doing it, where it is going, etc........ Screaming does come to my mind!
It has been awhile since I was in your shoes. I used to tell my husband that what ever he was doing 'was unacceptable' and he usually straightened up. However, he would then pout and throw tantrums at times. I found that I had to get a thick skin and tell him when I needed space, etc. I would have to ignore the pouting and tantrums. It worked early on.
Okay...here goes....ladies...they are not crossing boundaries....they are holding on to you as their lifeline. Their world has shrunk so that you ARE their world. What you do, what you think, what you watch, who you talk to, where you go....they are living vicariously through you. Not because they want to, but because this insidious disease has reduced them to this.
This stage will also pass. That has to be your mantra now...each stage WILL PASS. You must remember that the person you loved and married is no longer there. The boy or the toddler has taken his place. Think of him as Opie, or as a toddler, and realize that they will soon see you as their mother, not their wife, because she is a lot younger than you. If you need space, then have a caregiver to stay with them once or twice a week and enjoy. But when you are home, they will be your shadow. The sooner you accept it, the easier your life will be until this stage passes.
If you want a bath in peace and quiet, wait until after you get them into bed at night. If you want to read, try giving them a magazine with pictures (I took out a subscription to National Geographic - and he loves looking at the pictures - he's "reading" while I read!)....
Briegull's husband can still speak, so her advice is great if your husband still talks too. Mine hasn't been able to do so in over a year...Except to say "yes" and "no" and he lost "no" a few months ago.
I hope this helps....patience is the key, because it is only for a while and another stage will take it's place. It's rough, I remember...but we can handle it!!!
Thank you, Mary, for this. My DH has not yet totally reached the "toddler" stage but he does live through me. I mean everything! He even tells me I am his lifeline. That being the case, I will go whereever he goes - into his world and try to keep him happy and satisfied as best I can. Yes, patience is the key and believe me I have gained a lot of it over the past few years - something I never had before AD.
For me, the turning point in acceptance of the shadowing/questions was when I realized my husband was doing it out of fear. Fear of being left alone, left behind, forgotten. I can tell by the tone of his voice that he is fearful; he very often says "don't forget me" if I go into another room away from where he is. One thing I do is beat him to the punch--I tell him--"I'm going upstairs to get so and so and I'll be right back" or " Is it ok if I go take a bath?". He seems more agreeable and doesn't ask a bunch of questions if I do it that way. Also, I've flipped it around and used the shadowing a way to get him to do what I want. For example, when he wants to go to bed at 7 or 8 (which means he'll be up too early in the morning), I've started saying--can't you stay here and keep me company, I don't like to be by myself, etc. He accepts it when he thinks he's taking care of me!
All good advice. Especially about explaining that you are going to do something and then just doing. I would not ask them if it OK for me to do something specific. Although it might work now, it will be a bad idea for later.
They are going to want to go to bed earlier and earlier. Get them into the habit that YOU don't go to bed when they do. Your time and space is when they are in bed just as it was when you had babies. When they start napping, that counts too.
Also, last night because my daughter's family was here my husband got turned around and woke up and got dressed again only an hour after going to bed. He was totally exhausted a couple of hours before any of us were ready for bed. They really do need the extra sleep. Although I do try to keep him up an extra hour or two after he first wants to go to bed, pretty soon I'm going to have to just stop doing that.
It drives me nuts when he wants explanations about why I'm making certain decisions. I've learned to just do and not talk about it. At this point my husband can't hold a rational discussion. He has lost a lot of language. But he isn't yet at the yes, no and 4 or 5 more words. He can't make a decision about what to eat at the diner, where we go every day. I've gone from him opening the menu and me pointing out one or two things I know he likes, to me asking if he wants x or y today, to me asking would x be OK, to just ordering after telling him what we will be eating.
The boundaries need to be in your own mind. You need to recognize yourself that you don't have to explain anything you do.
Mary and Vicki, that was wonderful advise. Yes our dh do live thru us. They depend on us for everything left in their life. My dh told me the other day he is afraid to be without me. If I am out of his site for too long ( too long for him) he will find me. It is to the point that he can't go to sleep if I am not in bed with him. The t.v. may still be on, but if I am there he will knod off to sleep. We sleep closer, touch more and I know it is because he knows we are loosing ground with this disease. He is fully aware of all that is going on and that is the killer for us both.
We have to make allowances for them. We are both scared and know that this is moving fast, too fast.
God has granted me more patience than I ever thought possible. With that being said, there are still a lot of not so patient moments, but they are getting better for both me and my dh. I have quit my job before we moved in August and he is my entire life now. That may sound bad, but I will have time for me later. I don't mind waiting. He has given me such a great life full of love that I can stand to wait for mine.....later.....now is the time we have left, even if it is just holding hands and smiling and loving the memories of yesteryear.
moorsb, that was my bad. I'm sorry. I love the guys here and depend on them! Marsh, Phranque, TJ, GC, ol don, Baltobob, Jim and all the others know me well and know that I'll help any way I can! If a man asks a question that I have some experience with, I will answer with what I did in case it will help them. And, I was responding to the ladies who had asked the questionsin this discussion....BUT, I should not have addressed it to the ladies only. I apologize. Now, tell me what I can help you with.....I'll be happy to answer your problems to the best of my ability!
bluedaze, if I had to tell you a few months ago that I would ever get to this point I could not have guessed. I don't know what has happened to me but I think I have come to a point of acceptance that I did not realize I could ever reach. I say this because this is the hardest thing I have ever had to do in my life. I do take peace in the fact that my higher power, God, has promised me I could handle anything thru him but did I think this time would ever come? No. Do I know how long it will last before I crumble at the least little thing? No. But thru the help of my faith and the messages deemed from all of you on this site, I am able to handle things easier. I am thankful for all of you and especially the ones that have obtained their * because all the knowledge shared is building a stronger bridge for all of us. We will continue into this new year building on all the knowledge and prayers and faith of each other and we will survive. For ourselves, our loved one's and the new people that post on this site.
Mary and mammie, thank you both for your words of encouragement...I too have noticed that for now at least, I have developed a more patient attitude with my DH. I'm not saying it is easy by any means, and sometimes I just want to cry because I feel so sad for him and myself at what we have lost, but I am more accepting and feel I can be more patient because I realize he is afraid and needs me in a way he never has before. And I realize that I must be his advocate and fight for him when he can no longer do these things for himself...he used to be MY rock, now I will be HIS. And I thank God every day for my daughter, son and my mother who are my support system through this awful journey; and also for all of you...I read your comments almost daily, and gain so much strength from all of you!
bluedaze--thank you for the lovely compliment. This is going to sound cornball, but it is I that has been fortunate as well. He is an extraordinary guy and I wouldn't have traded him for anyone else, AD included.