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

Hi Joycee—Being a caregiver is such a roller coaster. My husband denies that anything is wrong with him. He claims I make things up when I talk to his doctors and make him sound worse than he is. By any chance, is your husband a veteran? My husband is with a 10% disability due to ringing inhis ears and he served during the VietNam war even though he never had to go there. But he qualifies for inhime care. Someone comes twice a week to help him shower and once a week to clean house. They have given him some inhome pt and speech therapy which is to help memory. He sees a neurologist in January, and hopefully we can get a definitive answer as to what level of dementia he has. The driving is a constant battle. He walks with a walker, needs help dressing, cant operate any gadget like a remote controll, telephone, microwave, etc, but he thinks he can drive! He was an insurance claims adjuster for 36 years, drove a million miles—thats his response. I cant think too far ahead into the future, try to take it one day at a time, and plan ahead only as far as I can see. I know what you mean about friends helping, our own kids arent even willing to help! Hang in there and keep in touch, I’m willing to listen if you need an ear.
Cardell

Boy, can I relate. My husband is 74 and has dementua probably due to liver cirosis. I try not to argue, but today I just lost it. He wants to trade cars again. This has been a problem all his life. But now its happening every 6 months. I try to reason with him, but he doesn’t get it. He shouldn’t even be driving—in fact he hasn’t driven in months. Every once in awhile he says hes going to go this or that while I’m at work. I simply say ok, but he never does. We have two cars, and if suggest going down to one, he throws a fit, and says they are his cars and he can drive whenever he wants to.
joycee, I would love to chat with you. Perhaps we can help each other through this nightmare.
Cardell

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!

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.

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.

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.