My husband, 77, is in the mid-stage of his neurologist’s diagnosis. What has become most difficult, as his sole caregiver, is his inability to recognize that anything is wrong. I have to hide the car keys, drive him to every appointment or errand, using all sorts of stories to allow me to take charge.
The few times that I tried to explain his condition, my husband became belligerent and cursed me. I have certainly avoided the attempt to make him believe what’s happening. That cannot be possible.
I am at my wits’ end. My children live far away and offer advice that does not take into account what is happening. My husband is not going to agree to adult day care or bringing aides into the house. The best I’ve been able to do is to have my cleaning woman come twice a week. My husband’s shadowing me and his turning into a Mr Hyde at night are just a couple of my husband’s symptoms. I just cannot leave the house without his wanting to join me. What on earth can I do?
Others on this site are very familiar and can help you. Stick around for answers.
I sincerely hope that you get some relief soon. Sending hugs and prayers your way.
We found a senior living facility that had levels of care. The well spouse had much more support- both from the staff and from other residents caring for ill spouses.
A conversation with an Aging Life specialist or Social worker knowledgeable about the facilities in your area would be a good place to start.
Do NOT feel uncomfortable using “all sorts of stories” as long as you can manage his care by doing so. If his circumstances and yours can be peacefully dealt with using this technique, it is both fair and reasonable and kind to do it.
Please remember that YOUR SAFETY AND COMFORT are important to HIS welfare, and also that if he were well, he would appreciate and respect your efforts to do the best possible for him.
Your state or county may have resources for caring for the elderly, and it may be worth it to give that resource a try too.
Hope you continue to visit here......
Is he on any meds to help with his sundowning symptoms and behaviors?
Hide his Driver's Licence and take him in to get a photo ID to replace his Driver's License.
Let husband shadow you to an Adult Day Care, even if he thinks it's for you and not him. Maybe after making some friends and or playing cards, ect at the Day Care Center, he'll want to go.
Let him shadow you doing things like getting a manicure and Pedicure, shopping for clothes, window shopping. Join a gym and work out, even if you just go for the swimming pool workout classes or the sauna, going on walks, ect.
He's probably just bored, and if you tire him out during the day, he might not be as much of a Mr Hyde at night.
Bup a couple books about it and let him see you read about it even if he thinks you're reading about it for yoursekf not him and leave it lying around, maybe he'll read it himself or adk him questions about if you do this or that but don't tell him he does this or that and he might think on his own that yeah, I do this myself.
Prayers
If he is routinely turning into Mr. Hyde at night, please talk to his doctor. He may be more frustrated and anxious at night as he gets tired. His doctor could prescribe him a mild sedative to help him relax and be more compliant in the evenings. If he gets violent with you, please call EMS; he may need a short stay in a geriatric inpatient psych unit to work on behavior modification.
I'm so glad you wrote about this. The Anosognosia diagnose means they don't know or believe that they have this. This sounds exactly like what my Mom has, its been a struggle just to get her to the neurologist, then when she got home cancelled all tests and follow up appt's. Ugh!!!
Is there a friend or someone from Church that may come to visit him? If it's able to become a regular visit that may be how you can get out on your own.
I wouldn't try to explain the diagnosis. Clearly its upsetting to him and not enjoyable for you either. Maybe try to talk about when you first met. How things were back then, etc. Something enjoyable. Maybe that will make him more relaxed and not so difficult at night. But if not, I've read on this sight about sundowning, although that might be if they are up all night. But something to talk to the doctor about.
If you have children. They need to plan a trip home, once, twice a year at least but not both kids at the same time. All you and your husband did for them growing up, its the circle of life and will give you sometime to relax to. We are not getting any younger.
Hope this helps you some.
My husband didn't understand his disease or limitations either, but he was a danger to himself and others. I had managed to talk with him about not driving, and the danger he put me in by taking the right of way on a left turn on a 2-way, 6 lane green light, but it was not easy.
About day care. He didn't want to do that either. But one day I took him to sign him up, told him I had business to take care of. He didn't know what the building was. He had to sit in the waiting lounge that was open he could see me, I signed him up, then we left. Later in the week I took him back and took him directly to the room, got him introduced to the "teacher", stayed with him a while, told him I had an errand, and left. He didn't follow, but was not a happy camper after I left , I understand he just sat on the couch, then looked out the window for a long while. I went back 4 hours later to pick him up. Didn't argue, or scold me about leaving him, or anything.
Next luncheon date, I took him again. This went on for another week, then I started taking him 3 days a week, then 4 days a week. He didn't always participate in the activities, sometimes watching out the window for me to return. I started him with 2 hours, then 4 hours, then 5 hours sometimes. It gave me some time to get a haircut, shop, do banking, visit with friends, lunch, etc. Better for both of us. Not always easy, but my husband was not belligerent but still not happy. Didn't want to go again, but did as I brought him, they took him to a table with other persons, and I just left quietly. Didn't say goodbye.
Increase the hours for cleaning woman since he knows her - ask her if she can assist in the role of aide to do things for him. You say you cannot leave the house without him wanting to go with you. If you were to leave the house without him, who would be at home with him? That person might also be able to come in as a 'cleaning lady', but actually provide aide care for him. On the other hand, he may not even need any kind of aide care if he can still manage himself in the way of bathing, hygiene, making a meal, etc.
Tell the kids it's time for them to come (one at a time) to participate in the 24/7 life that you have right now. When/if they show up, let them be the caregiver and you leave the house. You have to participate to give advice. Should things deteriorate further and you have no choice but to place him in facility, there's a good chance one of the kids will not want you to do it. Don't allow them to criticize or offer advice if they haven't actively participated.
If “cleaning woman” is the title he accepts, then heck .. all helpers and caregivers whom you may get to assist become “cleaning women.” Whatever title your husband accepts for people to come into the home and give you a break is ok.
The best thing for both of you is keep things calm, even if it means less said, don’t react. Many times it’s how we react that can set off upset with one with this disease. No matter how you want him to change, he can’t, so save your time and nerves. Remember he is not acting the way he is because he wants to, it’s because it’s how his brain is or isn’t working. It is very hard to see and experience this happening.
I have not left my husband alone in over 3 years. He has not driven in over 5 years. He now has only 1% memory left. Does he know that, no and I make that ok. Conversation is about the weather, birds, trees, what we are eating, etc.
I learned long ago when caring for Mom, it is me that needs to adapt and that things can change in a second. I never hesitate to tell him how much I love him. As I did on our 60th wedding anniversary 6 days ago.