How as a caretaker do you live day to day knowing your spouse will only get worse?

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We got the news of Alzheimer's today but I knew way before. Said definitely in middle stage, my husband said he nailed the test they gave him... he missed 15 out of 30 questions. Drew a clock with 12, 13, 14, 15, etc. He said he nailed the test. Now how do you live day to day knowing this is only going to get worse? He seems to think all is fine. They also said caregivers are prone to depression 50% is the number they gave. I feel like I am sleepwalking thru this at this point.

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Joycee, oh my, of course you are sleep walking right now, that is a traumatic diagnosis and it justs gut kicks anyone hearing it about a loved one, most especially a spouse.

I suggest that you not try and correct what he believes is the truth or argue about his perception of events. His brain is broken as you witnessed 1st hand. This will be a challenge, they can get obstinate about being the right one.

Most importantly, do not do this alone, use anyone that offers to help. If no one offers, ask. Make a list of things others can help with (ie, visit while you go take care of you, 2 hours at the mall, see a movie, run errands, sit in the park, whatever helps you decompress and have space, cook meals that can be frozen into serving size portions, call when they are headed to store to see if you need anything, clean the house, kitchen, bathrooms, do some laundry, change the beds, be another set of eyes on his condition as well as you, give all lots of hugs and thanks)and make copies, tell people what you need. I have found there are lots of people willing they just don't know how.

Look to your future, this disease is a long goodbye and caregivers, especially spouses, need to start planning for what they will do when they are no longer caregiving 24/7. Where will you live, will you travel, do you want to be adventurous, take classes, paint the house, anything. It's difficult to see ourselves without our live partners but I believe that it is helpful to start picturing our future self.

Let yourself grieve, you no longer have the man you married and more of him is slipping away, it is a damnable disease that slowly steals our loved one, we need to grieve the losses and not try to be stoic. I like to sit on the floor and beat up a pillow while I bawl and just speak what's in my broken heart. Find what makes you feel better.

May you be granted strength, courage and wisdom for this difficult journey. The Lord bless and keep you and your family.

Hugs 2 u!
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Reply to Isthisrealyreal
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joycee1 Jul 27, 2018
thank you for your reply it helps to know I am not alone. I relied on the Bcan site when he had the bladder cancer surgery...was on the site for 9 years, but painful to stay as so many of my friends on there were dying I have been married 57 years, you go thru a lot. But this is worse then his heart bypass and cancer. He thinks he is great....So I say nothing. But in reality he is gone...I know that. I try and visualize the house empty and I cry. It is gonna happen, so I need pplans. I would need to keep him home as long as possible for financial reasons, dont have the kind of money for nursing home care. It runs about $4.000 a month here in Fl. Doctor cant tell me any time table he said could be years or he could be gone in2 or 3 years, what a lousy ending.
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I understand why you feel like you're sleepwalking. Your body's trying to protect itself from the stress and pain. It's a defense mechanism.

You answered your own question. How do you live day to day knowing your spouse will only get worse? You just live from one day to the next. One day at a time. I know it sounds over simplified and to be sure it takes practice but we're only given one day and you can spend today worrying about what's going to happen tomorrow or you can spend it appreciating your husband and feeling gratitude that his Alzheimer's isn't as advanced as it could be. I hate to sound like a needlepoint pillow but try to find at least one thing everyday that you're grateful for. And whatever that one thing is keep it in mind throughout the day and into the evening and take it to bed with you. Get a good night's rest and then get up the next day and do the same thing.

However, all of this smushy-feel-good stuff won't matter if you have depression that's untreated. Your doctor can prescribe an antidepressant for you. That might make your journey a little easier. Use all the tools at your disposal to get through being a caregiver.
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Reply to Eyerishlass
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joycee1 Jul 27, 2018
Thank you, he has been sick for over 15 years with heart and cancer. but this, it overwhelmed me. My daughter refuses to believe this She contradicted everything I said in doctors office. I'd say he cant order dinner in a restaurant, and she'd say he is fine when I am with him he is fine. So no help there. I have friends, but how long will they put up with the outburse and the conversations where he struggles to say something. I will have to back out of things eventually, I know that. Here when a spouse dies, you go to the widows group. No one wants you around. I just think of today and tomorrow will take care of it self. But in reality he has been gone for awhile. every now and then, he is himself....
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Joycee1, seeing a spouse go through Alzheimers has to be THE worst. And I haven't done it myself. I endorse glad's suggestion to learn everything you can about the disease and typical behaviors, as well as techniques to work with your husband. The ALZ.org website has a great deal of info. And (as often mentioned on this site) Teepa Snow videos (online) can show you things too.
My best suggestion though, is to mark out time for YOU. As friends/neighbors say, let me know if I can do anything - take them up on the offer. "Gee it would be great if you could visit with hubby while I get a haircut, doctor's appointment, grocery shopping' --- or whatever is happening that week. Do NOT think you can do this alone. If you have a group of friends, let some of them visit with him, while you go out with the others for lunch, a walk or whatever.
And do realize, that placement may be necessary at some point. I had my Mom in an assisted living facility that only takes care of memory care residents. She was there for 18 months before she passed. This allowed me to visit daily as a daughter (I am retired) - for an hour or two. And then I was off on my own agenda/schedule. She had activities all day long and 3 shifts of staff to assist her. I arrived each day well rested and with a clear set of eyes on how to make her happy.
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joycee1 Jul 27, 2018
I hope each day this spacey feeling goes away and I can enjoy now. He still can take care of himself, but doesnt know what the hairdryer is, its that red thing, stuff like that. I deal because I have to. Thanks for sharing.
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Joycee, I am so sorry. My mom was diagnosed with AD about 13 years ago now. I provided 24/7 care for four years. She deceased just over a year ago.

The best thing you can do is learn all you can about the disease. Develop relationships with other caregivers, this site is great for that. Find caregiver support meetings in your area. Keep coming back here.

You need to plan how you will address the increasing care needs your husband will require, establish boundaries and stick with them. How long will you be able to provide care? You have to take care of you too. Begin to look at facilities in your area. Maybe even get on waiting lists, some are years long.

Consult an elder law attorney to setup trusts, etc and to learn about planning for you and your husband.
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Reply to gladimhere
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joycee1 Jul 27, 2018
well, need to keep him hone as long as possible for financial reasons. I see the pity in peoples eyes, and they are probably thinking they are glad it isnt them. I am just filled with fear and strong negative emotions right now. I saw this coming for over 4 years...I excused it as he is tired, hey we are old we forget things, but it got worse, I needed answers. Well I got them. But they can not give me a time frame...he said each case is different, husband is 82...so I know we dont have much time...I will deal just like everybody else does. Life goes on whether I like it or not.
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