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.
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Are you saying because she has Alzheimer's, she is suffering and you don't want her to have it any harder? No, Sighman. She has Alzheimer's, but YOU, as her caregiver, suffer the disease.
Apparently, it makes no difference to her if you answer the phone or not, because she doesn't remember and will call again. So, don't answer. If she gets agitated, LET HER. She'll forget soon enough.
You have received a lot of good advice on what to do, so I won't repeat them. Remember, you are not a bad husband for having someone else care for your wife. Her needs now exceed what you can provide. So get help.
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.
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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.
You are shooting down each suggestion as it comes, except contacting and Elder Care Attorney. This is classic FOG.
The many calls from your wife are a sign of anxiety, have you talked to her doctor about them? There are some medications that can help with that. Otherwise, block her calls, if it is an emergency, she can call 911.
The many calls are also an indicator that she should not be left alone. She cannot cope with it any more. She may appear to be physically safe, but mentally she cannot manage.
So now the options are, she has someone stay with her, she goes to a day program or you look at residential care for her.
It does not matter if she does not want someone in the house. It is not about her wants, it is her safety that needs to be addressed. You can try to disguise the helper as a housekeeper, to help you with chores and meal prep. It will be harder for her to accept as from your words, she is someone who has chosen to isolate herself from the world. You may have to stick around for part of the first few visits, then pop out to run a errand.
Memory Care is for those whose minds are broken, but bodies intact. If you place her in residential care, it does not mean you will no longer walk the dog together, or out for dinner with friends etc. It is not a prison, you are more than welcome to take her on outings.
There is no doubt that caring for an elder with dementia is hard, it is expensive, it can drive wedges in families and you may lose friends and your own health. You need to do everything you can now to protect your own health and wellbeing, while making sure she has the care she needs.
I appreciate what you are saying but I can only do what I’m able to do. Cooking, cleaning, washing the clothes, doctor appointments and my business keep me on the go 18 hours a day. Thanks for you thoughts. I listen to all input and suggestions and am grateful for everyone here.
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.
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.
No more delaying.
She is no longer able to fool people. They know something is wrong, just not exactly what. I can’t see much of a life ahead but she knew she had Alzheimer’s before it got this bad. She knew this but said she wanted to keep going no matter what happened to her. I’m sure she knew she’d need care but knowing her, I doubt she’d care about being a problem for care options. As I’ve said, I’m in it for the long haul. I could never respect myself if I walked away. It’s one of those damned if you do and damned if you don’t! That says it well. Thanks for your input.
You need to ask yourself some questions and be honest.
Do you believe she’s ok mentally? Do you believe that she understands just what a burden she is and does it matter to her? Do you love her enough anymore? Are you resentful that she would never do this much for you? You can’t possibly blame your kids for not wanting to care for her, could you? How much more can you do by yourself?
I ask because you have an intact mind... I don’t anticipate that maintainability at the rate your going, I’m sorry but since your wife has been selfish/self centered her whole life, that seemingly will get magnified as she progresses. She WILL absorb you and it won’t even be intentional this time because she always has but now her brain is dying. You can’t stop it, you can brace yourself and you can learn as much as possible but you are 1 human and can only do so much, long haul or not.
SHE CAN NO LONGER DICTATE HOW THIS WILL GO! Read that again. She will of course choose to stay home, you carrying out her needs and the daily grind, no hired helping because it feels invasive, that’s her default and it’s human nature but is it realistic? No, it’s not:(
Take that one sentence and try to embrace its viability and base all your decisions off of it, because you’re destroying yourself right now and that’s not going to cure her or make you love her enough to make it easier, or probably even matter to her. It May still take YOU a year before you let go and as she and her disease and needs progress, you will realize you’ll no longer be able to care for her... that is a very difficult reality but,
SHE CAN NO LONGER DICTATE HOW THIS WILL GO! When everything comes after that jagged pill gets down your throat it’s going to become more clear how to proceed. My whitest light is with you.
stfsight in. It’s hard and I know you must be feeling some of the confusion I am feeling. Would she do this for me. No! I know she wouldn’t. She is not a nightingale type of person. She has outsmarted doctors and others with her coverups. She knows what is happening and she knows she is a burden. At the very beginning she let me know what she expected and it’s a lot. When responsibility is there but love isn’t, it’s a bigger battle. If I felt deep love it might be different. I don’t know. That movie The Notebook was not very real. I guess if you’re deeply in love those lucid moments are worth the pain. I can’t address this as it’s not the case. The moral code is there for me but that is it.
It’s hard to say where one will draw a line in the sand. Right now I’m in the sandbox and it gets smaller every day. Your journey is beginning. I went through the same thing in the beginning. It took a while to get a diagnosis. When we finally did get one, she made no effort to learn about the disease. She just made what she expected clear to all. I know she has no control in the way she had at first. However, I still feel controlled. Foolishly, I didn’t start preparing with a 5 year look back. I should have. I don’t know what your situation is, but if it’s related to finances, by all means start planning now. I appreciate your input as so many are worried about her safety. I have done everything I can to insure it. I’m doing all I can do without falling apart to where I become ill. Stress kills. I know that. My sympathy is with you. Don’t make the mistakes I’ve made. Most people worry about the patient until the caregiver becomes a patient from stress. Good luck and thanks for sharing.