Facing reality

JC5

I’ve been in denial! As the days go by and I see my husband slowly changing I cannot hold onto that Hope I once had. Reading through the posts I am now aware that a tough road is ahead and there is nothing I can do to change it.  I am afraid of what the future will bring ,the uncertainty of it all - I pray I have the strength to help him. It’s overwhelming waking up at 2-3 AM  worrying about DH, finances, my health. My doctors appointment today is well overdue b/c all my energy and concern has been on my husband. I know my BP will be high and I am in no mood to be berated by my doctor! I’m already getting anxious! Well thanks for being here and all your wisdom!

Ed1937

JC, you just made a road to help you go forward. Acceptance is huge. Without it you will have a much harder time, and likely will not be as good a caregiver. You will be stronger than you ever thought was possible.

I hope the appointment with your doctor goes well. Make sure to tell the doctor about your husband. He/she will likely be understanding and helpful.

Pam BH

Ed is right on. Acceptance is a big first step. Yes, talk to the doctor about your husband and your stress level. Our PCP treats me for caregiver stress as well as providing most of my husband's care. He knows and understands dementia and the problems related to it and has helped both of us tremendously.

Beachfan

Ed and Pam are spot on.  It takes awhile, but once you can accept your situation, your stress level will drop.  Then take one day at a time, address issues as they arise and above all, don’t go looking for trouble.  You may never experience some of the problems associated with dementia; if and when you do……one day at a time.  But don’t lose sleep over what “might” be in the future.  Best wishes!

JC5

Thank you everyone. Your advice does help!

AnnMB

You have done step #1. You have accepted that your loved one has dementia. Your road will be a rocky one but having acceptance will help you navigate it and be a strong person.

Put together a team of people as fast as you can. Find out who they are in your area. Who you have available is different than we have in Canada. Have friends who can help you settle your DH is one thing you need in place. You will be come the trigger and the target and no matter what you do, you won't be able to settle them. I am lucky to have family and friends who helped at the drop of a pin.

Who else can you get on your team? Your doctor, specialists, the Alzheimer's society in your state. Do you have access to people who can help you get respite? to help with behavior issues? Are there day care centers for him to go to so you can have extra time to yourself. Do this as quickly as possible. Put DH on a waiting list to go into a home.

Are your legal papers in place? Call a lawyer to get that done asap.

These are all things you can do to help you have less stress. Then you can cope with each day one day at a time. I started to keep a detailed journal each day writing in it when I could. It went every where with me and I hid it after DH ripped out some pages.

Don't be afraid to cry or get angry. I learned to be angry when DH was outside and I didn't care if he heard me cry. It meant nothing to him but the anger I would display would. Let yourself grieve the loss of the person you knew. Learn how to nap when he does as the nights may be long when you have to settle him. And don't be afraid to say today is the day my loved one has to be admitted to a home. Yes it is hard and yes you'll cry but there comes a time when this has to happen. Mine was yesterday. I had to call the RCMP and have him taken away in hand cuffs to the hospital. He is in the mental ward waiting for a bed in LTC. He has a criminal record of domestic violence against his name and he doesn't understand or remember what went on. He's too busy in his own world making sure people are doing their work that he needs them to do.

I hope your doctor's visit went well. No doctor should berate you when you have been focusing on your loved one. My doctor said I was to get my blood work done and he'd talk to me after it was done. He moved on to talking about how I was coping and declared I was exhausted. I was heard and acknowledged. To our advantage, our doctor looks after my husband also so knew what was happening. If this isn't your case, tell your doctor. They need to know what is happening in your life.

I wish you the best and please stay strong. It is the only way you will be able to cope. It is a hard road to navigate as many will tell you.

Joydean

JC, I too hope your doctors visit goes well. It’s very important that you share with your doctor what you are dealing with at home. Acceptance is not always easy, actually it’s very hard. Because in a day or two he will appear “normal “ and your heart will tell you it’s going to be okay. Your head knows better. Not all people with dementia/Alzheimer’s are the same . Each person is different just as each person with Alzheimer’s is different. Your husband may never have some of the same symptoms as others. Take one day at a time, be prepared for the worst and hope for the easier days. Prayers for you and your family.

Ed1937

AnnMB wrote:

Are your legal papers in place? Call a lawyer to get that done asap.

Don't just call any lawyer. Call a CELA (certified elder law attorney). They will be best suited to help you.

Ann, I'm so sorry to hear about your husband. That has to be very stressful. But from your posts, it seems like you have a good head on your shoulders, and you'll be able to handle that. One day at a time.

Rjheld

I too just recently come to the conclusion that this is real and things are going to get bad.  I am trying sooooo hard not to bite his head off when he asks the same thing over and over.  I am actually doing better with that.  I am struggling with crying.  I don't want to cry in front of him but he can tell when I have been crying.  Now he asks, are you crying because of me or is it something else (the something else would be my oldest son who was my rock passed away 5 years ago and while I accepted it, it still creeps up on me).  My reply to him is usually I'm not crying because of you, I am crying because of our situation.  

This week he has had a lot of trouble with walking and his head feeling full making his balance not good.  I don't know if this is alzheimers or if it is something else.  We have been down the whole ENT route and everything is ok with that.  His blood work is good, probably better than it has been in awhile.  He shuffles his feet sometimes so badly I am afraid he is going to fall, knock on wood so far that hasn't happened.

I feel like our friends are cutting us out of activities that we/he could still do and that has been a huge struggle for me to accept this.  Crying usually follows when I think about it.  I just keep praying that my health will hold out because I don't know what we would do if it doesn't.  He has 3 boys that live close and I have one that lives close, mine has no idea how bad things are for me.  My doctor has me on Welbutrin which has worked well for me but lately not so sure, he wants me to increase my xanax and take it more often.  I seldom have had to take it but now it looks like I will be.  So sorry for the long post, I just feel like I have no one to say this stuff too.

Prayers for all of us on this journey.  Thank you for listening.

Ed1937

For those of you who are becoming badly stressed, if you have family available, please let them know how bad it is for you. And ASK FOR HELP. You have limits.