I can't do this!

RNS

I feel guilty to even vent for risk of sounding like a spoiled brat and feeling sorry for myself. My DH is 88 and I'm 68.  He had a small stroke/brain injury in 2013.  He now bears the diagnosis of VD and AD.  At this time, I am his only caregiver.  He is at the end of stage 5 with 1-2 characteristics of Stage 6.  He doesn't wander, isn't verbally abusive, certainly doesn't cook, is basically still continent, sleeps all night and most of the day, doesn't shower or do oral care, will hardly move, doesn't have much of an appetite -except for sweets-, objects to going to dr appointments, can't use his phone or navigate the tv, has begun to sundown by shuffling around and shadowing me, feels safe and satisfied when I'm sitting right beside him, NO conversation NOTHING, and one of the biggest problems - he doesn't think anything is wrong with him.  I think you get the point.  He is just "here" to be loved and cared for.  Except, MY GOD I am going crazy.  I have indoor cameras to see him when I leave for a short errand but I have NO real time ever to myself.  He will still go with me to do one or two things.  He gets tired quickly and I have to cut them short to get him home.  I have delayed getting extra help because he will be hurt and angry since there is "nothing wrong" with him.  I am having back issues and I'm going to tell him they are to help me.  Hopefully this will pacify him.  I am a young 68 and have always been very active.  The one things he does with me that he enjoys is to watch me play basketball in a Granny Basketball league.  I think about all the fun things we did when he was 68 and how active he was and know that my life is far different.  I feel like I'm dying inside. Every day part of me retreats inward and gets sadder and more lonely.  I knew when I married a man 20 years my senior that life would be different.  Not in my wildest dreams did I imagine this. If I need to be told to get tough and suck it up, so be it and I will listen. I do speak with a counselor weekly and she has helped.   I'm just lost......

Ed1937

RaeNell. welcome to the forum. Sorry you have reason to be here. This is a great forum, with people who "get it". Anytime you feel like you need help or just understanding, we're here for you.

You mentioned that he doesn't think there is anything wrong. Are you familiar with anosognosia? If not, here is a good link for you. Why your loved one doesn't believe they have dementia- It's NOT denial. 

As you well know, this is a hard road to be on. Read whatever you have time for here to be familiar with the site. We'll be here for you.

Sligo177

RNS,

You are wonderful, you are NOT a spoiled brat!  You have tried your best to honor your DH.  But you have to make time for yourself, otherwise you will be no good to him if you get injured or ill.

I hope you will get some help.  Maybe talk to his providers or local elder care businesses for suggestions?  Showering and dental care are tough issues but if you get the right person to come in they can help him and take the burden off you. Plus, you need a few hours away to do what you want to do.

He may be angry.  But you are the one it all falls on.  If the roles were reversed, you would want him to get help caring for you.  

Good luck, remember it won't change unless you make it happen.  Now let me say that to myself, ha ha!  Because I do have some of this going on too.  Bless you.

Arrowhead

One thing I have learned is that it's amazing what you can do when you have no choice. You are stronger and more capable than you realize. You can do this. Do not feel guilty with how you deal with your situation. You must survive, even if it means making him angry for getting the help that you need. He is not the only victim of this disease, you're also a victim. You need help as much as he does. Make sure that you BOTH get the needed help.

Marie58

I think getting help and telling him it's for you is perfect. And it's true, you need the help. And where do I sign up for Granny basketball???!!!  That sounds great!

Buggsroo

Hi Rae,

I could have written this, because I feel hopeless and trapped. My husband is 12 years older than me and it is difficult because I got this urge to go back North Africa or Turkey, but I can’t.

You are not a spoiled child, quite the opposite actually. Taking care of another human being who is disintegrating before your eyes is not for the faint of heart. It sounds you will need to get some help, I believe I am at the same stage as you, I realize if I can’t do it, who will. 

Keep coming back and posting, it is really nice to know there are a group of people who get what you are saying, don’t judge and can provide good advice.

Lynne D

Hello RNS!

Our husbands are at about the same stage and behaviors (except mine is at times verbally abusive and uncooperative). You are not spoiled, you do not deserve what was handed you. You are young and tethered to a body that used to house your husband.

I contacted our local Area Agency on Aging and got three hours of respite care per week, via a grant they gave. It could be more…

I introduced the caregiver as someone who would be helping ME, then after a visit or two, I stepped out to run a critical errand. He has come to accept her. It may take time.

You will come to know just how much of a relief it is to get into the car and not have to buckle your husband in, to have to constantly keep track of him, to attempt to give instruction/direction, to walk at your own pace…It is more liberating than you might imagine.

I have no idea what is next (you never know, particularly with mixed VD and AD) but I do know that respite care helps. So do home projects, and calls with family and friends. Sometimes you just need to talk to a fully-functioning adult. 

Please stay active in the forum and know that we are here, even for rants!

Paris20

RNS, don’t berate yourself. We understand exactly what you’re saying. We live it every day and we know how right you are, this is not a place to suffer in silence. Vent away. I did that yesterday. You’ll feel better.

Your description of your husband’s behavior reminded me of my husband. You’ll see the term anasognosia mentioned often. It means your husband cannot understand, comprehend, or accept his condition. Nothing you say or do will change that. Today my husband didn’t come down until 4 pm. He had been in bed for 19 hours. When I mentioned that he had been in bed without food for a long time, his curt response was, “So what? I’m not hungry.” I said no more. 

Do get help. My husband resented the aide we told him was for me. Now he is used to her presence. Taking this burden alone will hurt you in countless ways. Your husband will forget what you tell him so don’t worry.

RNS

Dear Friends,

Thank you!!!  I really needed your understanding and encouragement.  Today I am making calls to find a part time caregiver.  I need this, I deserve it and my DH would want me to take care of myself.  I have been reading posts on this forum for awhile and I cannot express how helpful it has been.  Each of you are special people and I am thankful to have found you.  God bless each of you and may today be a good day.  

abc123

Dear RNS, you have every right to have the feelings you have. You are only human. Feeling the way you feel does not mean you don't love him and want the best for him. You miss him, you miss the life you had. That is 100% okay! 

I consider myself blessed because I didn't lose my husband to dementia, I lost him to cancer. It's my mother who has alzheimer's and I'm watching my dad grieve over her daily. They have been married 63 years. She was 17 when they meant. As much as it hurts to see her suffer from this disease, it's hurts me just as much to see him suffer. I hope, wish and pray that God will see fit to take her soon, today, tonight. She is now early stage 7. It seemed to me that she was stage 5 for a very long time. She experienced a lot of what you mentioned about your husband. For me, one of the hardest things to accept and deal with at that stage was her not bathing or changing clothes. Getting her ready to go any place was emotionally and physically draining. It took me and dad at least two hours to get her in the tub and then I took over and he would give her a pep talk (sometimes he had to talk loud and stern) of encouragement. Wow! When I would pick up the bar of soap she would get highly insulted because she thought she had just bathed. It was a fricking nightmare. I totally understand your feelings! Everyone here does too! I had to constantly remind myself that she had brain damage because of the disease. In her mind she was perfectly fine and she believed she still ran her household down to the smallest detail. The facts were she couldn't even make a grocery list. It's amazing to me how very different this disease effects each person. With my mom, it was as if she woke up one day and turned off her own switch. She just stopped doing everything. In a lot of ways, we were fortunate. We did not have to fight with her about not driving, using appliances, going outside. So many people here have to worry about their loved one getting into a car wreck or getting lost or getting hurt in the kitchen. Many people here have to constantly worry about their LO escaping from the house. Dementia is terrible and I hate it for all of us. 

I'm glad you are considering bringing in help. The sooner the better for both of you. Tell him the help is for you. I read in your profile you were a teacher. Could you tell him you are training this person to be a teachers aid? You know what he will buy into better than anyone. I wish you the best of luck. Keep posting because it's important to address your feelings. We understand because we are in the same position. Post about the good things and the bad things. Feel free to ask any kind of questions, nothing here is too bad or shameful to discuss. We help each other and support each other as much as possible. You can come here to rant and rage as much as needed! I'm sorry my reply is so long. I just wanted you to know I understand how you feel. Hope you have a good day today. There is so much to learn about this disease and about being a caregiver. This forum is a life saver for me. Read as much as possible. 

Joydean

RNS, you have truly come to the right place. As everyone here have stated they have been through what some of us are just getting into. It’s definitely not anything any of us wanted, but these wonderful people have helped me in so many ways. They will help you too.