My wife is about stage 5 and appears normal to outsiders. She toilets herself, showers, dresses and gets around house with no assistance. She can’t cook, turn the TV on and the microwave confuses her. I do all of the cooking, cleaning and shopping in addition to now running my business from home. I do have to go out to bank, go to post office and attend meetings. She will call me every 5 minutes while I’m away. Bringing her along becomes disruptive as she talks constantly. That said, it’s not a viable option. Even if I have someone stay in the house with her when I’m gone, she still calls me. If I don’t answer she keeps calling. If I do answer, she will still call again and again and again. Taking her phone away is not an option as she carries it everywhere and it seems to be her safety net. I have a well established business and working from home is hard. However, hiring someone to stay with her has not been successful. She is very threatened by anyone being in the house. She gets annoyed with them too easily. When possible, my daughters will stay with her if I have to go out of town. She enjoys them but still calls me to the point where I feel like I am losing it. I’m doing it all and she wants more. I have a few health issues myself and so I need a little peace of mind to deal with them. She is only happy when I am with her or she is at, or going to a doctors appointment. We never had a marriage made in Heaven. She was not the best wife or mother. I stayed because we had children. After that I stayed because there was no point in leaving, there was no place special I wanted to go. She was happy as long as she had the comforts of life. I just accepted the way she was and the way it was.
For the past 4 years I’ve stayed because it is my responsibility to be there for her. If I were to leave, it would all fall on my adult children and they have a difficult time dealing with her as it is (and do so reluctantly). I don’t think she is at a point where she needs memory care. Also, to be honest, I doubt I could afford a nice facility. She won’t be eligible for Medicaid as her name is still in deed to our home. I don’t allow anyone to see what is happening to me, but I’m unraveling and don’t know where to turn. I know I can’t leave her. I have to see this through and act as affectionately as I can. However, I am alive and don’t have a life or any hope of one at this time. Her disease has progressed slowly and I know I’m in for a long haul. Don’t get me wrong. I want the best for her. She did give me two children I love dearly. I don’t want her to have a harder time than she has to. The problem is I don’t know where to go from here. Everyone sees me as a pillar of strength. I’m not. I’m crumbling inside.
And stop thinking you are the only person who can make sure she receives the best care. You say things don't go well when there are hired caregivers. You call this going well, when you are the caregiver? There will be teething troubles, and there will always be good and bad days, but what you have to adjust to is the new concept of "it's okay not to be okay."
E.g.: your wife wants to know where you are and repeats the question every fifteen seconds because she doesn't have your number on her phone. She is anxious and agitated. It takes time to reassure and then redirect her, and it takes each new caregiver some time to get into her routine in order to do that, and when you return home you find that there has been a bit of an emotional and behavioural rollercoaster going on for the last few hours. So it isn't rosy - but it's okay. Your wife is fine. No harm has come to her.
Learn to be off-duty sometimes.
. She has everything done for her from meals, taken to doctor appointments (which she loves), taken out to dinner, taken for walks by a lake, shopping etc. Our girls are adults and I am very accessible. They are not. I guess I have to wait for the time my wife must have professional care. She would not accept going now. In the meanwhile, I’m stuck and have to be responsible. I wish things were different. No one seems to realize what a heavy load I carry. The daughters don’t. One will jump in for a couple of weeks here and there if I have to go out of town on business. The other daughter avoids helping but that’s because she has some emotional issues not related to what’s going on with myself and my wife.
Getting help from our girls on a scheduled basis has been tried. I’ve asked but they don’t follow through. I love my kids and don’t want to stress them with demands. They have their own lives to live. Thank you for your encouragement. I really appreciate it.
Ydjc
When people with dementia repeatedly do and say things, it's likely because they forget they just did it. So, there is no way to convince her to stop. She may get tired and stop on her own or the phone could be removed from her access. It might help, if there is someone with her to tell her, the reason you are not answering her call is because you are driving and it's not safe to answer the phone when you drive. Of course, they will need to repeat this explanation over and over. She will likely do other things that are equally frustrating and exhausting. And, she will need to accept help from someone other than you. It's not feasible for one person 24/7. It's likely she will start repeating the same statements over and over too. My LO would say the same sentence or ask the same question 100 times in one hour. There is no real way to prevent this.
You can read online on sites like this one about how a spouse may care for a person with dementia in the home and all that it entails. I'd also read about the progression and what that will mean with regard to repeating, mobility, sleep disruption, incontinence, pacing, wandering, etc. It's a lot to consider. It's really about the reality of what level of care she needs and will need as she progresses. The strength and bravery of the caregiver is not really at issue. To me, it's more of practical thing.
Really, a Dementia patient should not be left alone. You never know what they will do. Think of her as a small child, would u leave them alone.
Adult day care could extend the time your wife can remain in the home and give you several hours each weekday to attend to your own concerns, but I also recommend you begin looking at MC's because sooner or later the day will come when she will need to be placed for 24/7 supervision and care.
I also recommend you set your cell phone to block your wife's number when you need to meet with others or attend to business details. Most cell phones allow you to setup a personal vm message for blocked calls by number. If you wife still has reading comprehension, you might want to try write her a note when you leave stating in general where you will be and when you will return, along with who is staying with her.
Honestly, I would block her calls when you leave the house and need a break. You matter in this situation as well and you need a break, period.
A person with dementia or Alzheimer's doesn't have to be in the end stage of the disease to be considered 'ready' for Memory Care. My mother has moderate dementia & has been in Memory Care since May; and in Assisted Living for 5 years prior to that.
Caring for a person with the issues your wife is experiencing becomes TOO MUCH after a while. You are only human and entitled to a life of your own. Your wife is also entitled to get 24/7 care by people who are trained in dementia care and know how to deal with her. MCs have activities specifically designed towards people who suffer from the various brain diseases. 3 hot meals a day and 3 snacks. Outings to various places like ball games and museums.
Don't immediately brush off the thought of a Memory Care or Skilled Nursing community for your wife before you get proper counsel on the matter. Dementia will normally reach a point where it becomes literally impossible for them to be cared for at home ANYWAY, so the sooner you look into your options the better.
This does not make you a 'bad' husband. It makes you a husband who's reached the end of his care-giving rope, my friend. I work as a front desk receptionist in a Memory Care community and I see men every day who come in to visit their wives who they had to place here. One gentleman comes twice a day. It's a win-win situation because they BOTH have lives now, versus neither of them.
Many of us come off as 'pillars of strength' but are crumbling inside. Trouble is, we've spent too long thinking and worrying about others and forgetting about ourselves! Just b/c your wife has a disease does not mean you get to neglect yourself. Get busy looking into what changes can be made to make YOUR life easier!
Best of luck!
Also, I need my phone on for business. I have a very demanding workload and moved my office to my home so I could care for her. Downsizing is on the agenda. I’m getting the house ready to put on the market as soon as possible. I don’t think she is at the point where she would go to a MC facility. She doesn’t realize there’s anything wrong with her except for being forgetful. She still bathes, toilets and dresses herself. She likes to eat and loves sweets. She watches TV or sleeps all day. I take her to appointments with doctors, I take her shopping when I go for groceries. She is a problem but she likes going out anywhere so I take her along. I can still take her out to dinner and to the dog park with our loving mutt! I will take her for a walk along the lake nearby and try to be as nice as I can. As I said, I should have left years ago but I didn’t. Now, I can’t because it would be just plain wrong. She has always been on the selfish side and expects to be cared for. I’m doing all I can but the future scares me. She wants to be with me every second of every day. I know she can’t help repeating the same things and I can’t help getting frustrated and annoyed. Our adult daughters help some but it’s not something they’re compelled to do. They have their lives and I understand. If this was that movie where the man reads from a diary and stays alongside his wife through her Alzheimer’s journey, that would be
the perfect solution in a perfect world. I have stayed through obligation and the need to be a decent human being. However, there is nothing romantic about Alzheimers, my life or my life with the woman I married a long time ago. Like I said in my cry here for help, I’m in it for the long haul. At the same time, I’m lost and feel very much alone. I appreciate this community very much and thank you for your suggestions, all very welcome.
Functioning as well as she does, she might be eligible for Assisted Living, and that in turn may be less expensive than the costs you were considering.
Take some time to address what your feelings are about where YOUR life is. You are fortunate enough to have children who love you, and deserve a more accessible dad. You’ve paid your dues.
You may even be surprised that your wife does even better in residential care than at home.
Consider all your options. It may be time.