I don't know what to expect or do next

Posted by elsmore @elsmore, Feb 19 10:03am

My wife of 59 years and I both turn 80 this year. My wife started to show signs of dementia about 5 years ago and at that time I committed to her that I would keep her at home as long as I could. Things are now really bad. She has lost her memory to do most common tasks. We have had separate bedrooms for the past 3 years or more. This morning she woke me up at 5am to tell me she had to go to the toilet and did not know how to go. Early hour wake ups are common. She talks to herself non stop, wanting to go home, get out of this place and asking why am I so mean. Believe me I am not mean and try my best to keep up with daily life. Home is her place of birth which she left when we got married 59 years ago. Some days I feel like screaming and running away but of course this is not going to happen. I am trying to solve the problem of limited outside contact. She has no relatives and one friend who she talks to on the phome as she lives a distance away. She fears everyone and has hallucinations about people who are in the house and steal from her. A few days ago she said someone raped her when she went to the bathroom. There is much more that |I could say but I am reaching out for help.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

You are a knight in shining armor for loving and caring for your wife! I just caught on to what has been happening to my husband for the last 4 years and I am petrified of the future. Recently he kept getting up to go to the bathroom and tried to pee in the closet or other doors when I realized he could not see his way to the bathroom so I got motion lights that stick to the walls/furniture and light his way then turn off. He has not gotten lost since. That may be simplistic for your wife and may not be the solution. She may need a sitter so you can get some rest. If you cannot afford one, finding a good home for her ( or assisted living for you both) may be the next step. Your physical and mental health may depend on such. It is OK for you to change your promise of caring for her at home!!!

REPLY

Sounds like you did what you committed to with all your heart and now it’s time to find another solution for both of you and it’s ok. Finding a place where your wife is safe and cared for and you can still be there for her, while taking care of yourself seems like a good step, I wish you WELL as you navigate the best solution for your wife and you.

REPLY
@boppi

You are a knight in shining armor for loving and caring for your wife! I just caught on to what has been happening to my husband for the last 4 years and I am petrified of the future. Recently he kept getting up to go to the bathroom and tried to pee in the closet or other doors when I realized he could not see his way to the bathroom so I got motion lights that stick to the walls/furniture and light his way then turn off. He has not gotten lost since. That may be simplistic for your wife and may not be the solution. She may need a sitter so you can get some rest. If you cannot afford one, finding a good home for her ( or assisted living for you both) may be the next step. Your physical and mental health may depend on such. It is OK for you to change your promise of caring for her at home!!!

Jump to this post

Thankyou so much for your kind thoughts and idea re the motion lights. Last night it was 2.54am but after she had gone to the bathroom she went back to bed and sleep. Another day and I always start it off new. Thankyou again.

REPLY
@maryvc

Sounds like you did what you committed to with all your heart and now it’s time to find another solution for both of you and it’s ok. Finding a place where your wife is safe and cared for and you can still be there for her, while taking care of yourself seems like a good step, I wish you WELL as you navigate the best solution for your wife and you.

Jump to this post

Thankyou for your comments I do appreciate your response.

REPLY
@elsmore

Thankyou so much for your kind thoughts and idea re the motion lights. Last night it was 2.54am but after she had gone to the bathroom she went back to bed and sleep. Another day and I always start it off new. Thankyou again.

Jump to this post

The lights I bought from Amazon were made by Energizer, called pathway lights and each ran by battery which last a good while. It sticks to side of just about anything. They costs about $10 per light and I got three but may be adding more as it is a long walk to bathroom but these really light up the way. I also put a nightlight in the actual toilet room so he could see the toilet well.

REPLY

I am so very sorry you are going through this. I believe it is much more difficult for older couples who have been together a lifetime. Some ideas that might help: 1) I bought a toilet chair that can be placed by the bed so there’s no need to wander lost looking for the bathroom. It’s portable & can be moved out of the way during the day. 2) I installed light switch plate covers (from Amazon) so my husband can find the switch to turn the bathroom light on. (One bathroom is just 6’ from the bed but he still needs directions to find it.) I also found motion-sensor toilet bowl lights (also Amazon). They detect entry into the bathroom & light up the inside of the toilet bowl. They have a flexible arm to fit over edge of bowl. They are easy to keep clean. I take them off in the morning & wipe them down. 3) plug in and/or motion detector night lights (as someone has suggested). Hope these ideas help ease things a bit. This group is a great resource that you can check with at any time.

REPLY
@coping123

I am so very sorry you are going through this. I believe it is much more difficult for older couples who have been together a lifetime. Some ideas that might help: 1) I bought a toilet chair that can be placed by the bed so there’s no need to wander lost looking for the bathroom. It’s portable & can be moved out of the way during the day. 2) I installed light switch plate covers (from Amazon) so my husband can find the switch to turn the bathroom light on. (One bathroom is just 6’ from the bed but he still needs directions to find it.) I also found motion-sensor toilet bowl lights (also Amazon). They detect entry into the bathroom & light up the inside of the toilet bowl. They have a flexible arm to fit over edge of bowl. They are easy to keep clean. I take them off in the morning & wipe them down. 3) plug in and/or motion detector night lights (as someone has suggested). Hope these ideas help ease things a bit. This group is a great resource that you can check with at any time.

Jump to this post

Thanks for the info and the photos, I’ve never heard of these. I have balance problems, so these will be really helpful.

REPLY

You are in over your head, you cannot continue to care for her, she needs to be placed in MC with 24/7 caregivers on board.

My stepmother is in MC, we visit her to make sure she is properly cared for, she no longer knows who we are.

Your wife has a disease that has no cure, one that will not improve.

I would start looking at facilities, you can visit her, and still have a life. I would go to the Aging Care forum, lot's of people there that are facing the same issue as you ar.

Wish you the very best.

REPLY
@coping123

I am so very sorry you are going through this. I believe it is much more difficult for older couples who have been together a lifetime. Some ideas that might help: 1) I bought a toilet chair that can be placed by the bed so there’s no need to wander lost looking for the bathroom. It’s portable & can be moved out of the way during the day. 2) I installed light switch plate covers (from Amazon) so my husband can find the switch to turn the bathroom light on. (One bathroom is just 6’ from the bed but he still needs directions to find it.) I also found motion-sensor toilet bowl lights (also Amazon). They detect entry into the bathroom & light up the inside of the toilet bowl. They have a flexible arm to fit over edge of bowl. They are easy to keep clean. I take them off in the morning & wipe them down. 3) plug in and/or motion detector night lights (as someone has suggested). Hope these ideas help ease things a bit. This group is a great resource that you can check with at any time.

Jump to this post

Many thanks for you comments and solutions.

REPLY

Sir. You MUST somehow find someone who will help take care of your wife whether during day hours or at night even for a couple of hours a day. It doesn’t have to be a Nurse but someone loving to help you. You cannot continue like this. Investigate agencies that provide home health care. Ask a friend to sit with your wife while you shower, walk outside, go for groceries. Do you have family nearby? You NEED a break. Speak to someone at your Church or Synagogue etc. People are willing to help.

REPLY
Please sign in or register to post a reply.