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.
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.
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.
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.
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.
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.
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.
. 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
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.
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.
Now, seriously, you have to do something when you are out about those ridiculous phone calls. IF there is an emergency, hopefully she'd call 911. You have to block her calls and maybe to check back on her, you could call every so often, like once an hour to see if everything is OK.
She will not want to leave the home. OK. BUT since she can no longer take care of herself, it is no longer her choice. You have to do what's right for you. This situation seems to me to be spiraling down and down and you need to put your foot down and get some help! She doesn't have to like it but you can not do all this by yourself. It is TOO much.
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.
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.
I just don’t want to not answer when there is an emergency. Getting so
rome to stay with her would cost $1000 a month for part time help. I’m trying to keep finances set so that when she absolutely needs full time care I can step up to it. Working from home is costing me more for a multitude of reasons. Things don’t move as quickly when your employees have to adapt to working from home. It’s complicated. Thanks for sharing your experiences with me. I’m grateful to everyone in this group.
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.
If she has always just done whatever she wanted and never had any consequences, well, it is unlikely to change now. It unfortunate that you didn't put your foot down when she was younger. She is not going to start worrying about how she impacts you, just give me what I want to avoid the drama. My mom is the same way. Frustrating, but I can hang up or walk away and ignore phone calls, I don't know what I would do if I couldn't.
I am loathe to say this, but -
take the battery out of her phone when you need to be out (or permanently). Of course, this will only work if she has somebody with her. It seems that is the best option for your sanity.
Just briefly here.....we can have calls diverted to anorher ph no if that is of any help
She possible rings you so much because YOU is all she sees as having in her life ...someone she knows she can rely on and you will be there to pick up the pieces....
She may actually get anxious when your not around
Another theory i thought if she is "on the ball" tell her you are driving and not allowed to ans the phone. ....tell her you will ring her at. A certain time once while your gone ...perhaps say that way you can get back home a lot earlier without interuptions.
Try and get a promise out of her to cease ringing.....so that time on ph to her will get you home earlier....if she rings often explain it will make you super late home....thats if she is capable of understanding that. ..thats what she wants. YOU. why? Because she knows you will oblige. .
Tons of best wishes
I also work from home. I would answer the first couple of calls, then skip the next five. Answering the phone didn't help her because she either didn't believe me or she would immediately forget that I said things were exactly as they were supposed to be. So I stopped feeling guilty about not answering. My answering did NOTHING to help the situation.
What probably helped the most was that my iPhone offers a voicemail-to-text option. That way I could briefly look at her message in text and see whether it was truly an emergency or not. Also, if your wife is calling on cell phone, when you set your phone on Do Not Disturb, you can designate a standard text message to be sent. That way she would think she was at least getting a response from you.
The difference is that I knew there was someone in the house with her at all times. We were able to find a young woman from her church affiliation that came three days a week while my niece was at work. It's really a matter of finding the right person who can understand the disease and take your wife's annoyance at them. (Finding an individual rather than through a service is less expensive.)
My sister is now living with me, at least temporarily. She sometimes doesn't recognize me as her sister and asks to call me. So she sometimes thinks I'm not allowing her to call me. That's a tough one!
You're not alone. Glad you reached out. Wishing you and your wife the best.
As a general rule, a home is exempt (that is, it doesn't count toward Medicaid's asset limit and Medicaid does not require it to be sold to pay for long-term care) if all of the following conditions are met:
— It is occupied by the applicant and/or the applicant’s spouse.
— The total equity value is less than $543,000 ($814,000 in some states, including California, New York, and Connecticut), and
— Title must usually be held in the name of the applicant and/or the applicant’s spouse.
There are other exemptions too. Such as your car. These were made so that spouses like you could remain in their homes while spouses like your wife are able to get the care they need.
Please be sure to speak with an elder care attorney before putting your house on the market as you are probably better off keeping the house than cashing out on it.
Also, medicaid has a 5 year look-back on assets. So even if you won’t be putting your wife into full time care now, its worth meeting with an attorney and planning now in case you need to transfer assets, etc.
Thak you for your thoughts.
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.
If you are working and your children have their own families and jobs to maintain, your only two options are hiring someone to come into the home or place her in a facility. Only you know what you can manage. You've got to do something about the phone situation to help with your immediate problem. Maybe get a burner phone and put a message on it that she can hear when she calls it..."Hi honey, I am at the store and will be home shortly". On your business phone, hide the number from her or block her calls on it. Only allow calls from the caretaker you hire.
You don't have to be a pillar of strength Sighman... just do the best you can. That's all any of us can do.
I think you're feeling guilty because of past feeling of wanting to leave and that really doesn't have anything to do with the tough decisions you're having to make today. Even if your marriage/relationship was so fantastic that poems were written about it, most people cannot take care of a person with dementia full time while working without lots of help and even then it is challenging.
If your adult children have spent any time alone with her at all, they are fully aware of the stress of it all and will understand whatever decision you make. Once you make a decision, you might want to tell your children ahead of time just so they aren't shell shocked when it happens Remember this is about your wife's safety and wellbeing and your sanity.