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.
(1) it only gets worse; and,
(2) the actions of mid to advanced dementia sufferers are very unpredictable.
My father decided to replace an electrical outlet without turning the power off first. Another time he put 20 lbs of pool chlorine complete with algaecide into the house's fresh water well. When he couldn't find any matches to start a fire in the fireplace, Dad turned on all the stove burners, then added newspapers and kindling to start a fire there. No one in the family saw any risk he would do any of these things prior to them actually happening. One brother still wanted to leave Dad alone in the house occasionally after all of them too.
Many of the comments to your post are from posters who recognize your wife's anxiety and agitation as precursors to more unpredictable and potentially dangerous behavior; that's why we have repeatedly stated your wife needs constant supervision. It's not about whether your wife _wants_ to go to adult day care or not. It's about whether your wife _needs_ to go to adult day care so she has appropriate supervision while you are out of the house.
Do you disable the stove when you leave? Secure your car keys when you are home? Are all the windows in your home on the ground level? Is there a pool or hot tub outside? Are you aware stage 5 ALZ suffers have jumped off balconies? Went swimming fully clothed? Gone out for a walk in snow without a coat? Driven off in the car and disappeared for days?
Until your wife has constant supervision, I urge you to consider a good security and monitor system. Something with a good fire alarm so when she sets something on fire, your house will not burn down. Something with a flood detector so when she overruns a sink or bathtub, you have a chance of preventing the whole house from flooding. If you have any natural gas appliances or fireplaces, you might want gas and co2 detectors too. Some cameras on the exterior doors so when she decides to walk off looking for you one day you at least know when and what direction she started off in. You might even want to get her a fall detecting GPS enabled device so you would know where to find her, assuming she doesn't take the device off. One day soon, you may need the security system to wake you from an exhausted sleep because your wife has opened the front door at 3:00am.
I'm sorry, I know this is not what you want to hear. You still believe you are in a land where your wife needs your help cooking or housekeeping because of her incapacities. Because she hasn't scared the crap out of you _yet_, you are discounting the land where her confusion and broken brain together with her mobility lead her to take unpredictable actions. Most of those actions will be merely irritating, but a few may have life and death potential, not just for your wife but maybe for yourself and others too.
Hang in there if you can / everyone is different. I am not sure how long she has been calling you all the time, but that will probably stop eventually (to possibly be replaced by a different issue). Again, my Dad has done things for 2-6-8 mths, then it stops. Good luck to you !! I wish you the best and just remember, you can only give so much and you have two daughters that need you to be around too!!
I guess what you are saying is what I’m feeling. We have to manage the best way we can and, later, will not regret our loyalty. When I say loyalty, I mean to her, to my girls and to myself and you, to your parents and family. I’d rather be anywhere other than where I am. I’ve interviewed with HomeInstead and a few other places like this. The cost would hurt the long term plan. I know that to have her in a MC that is decent will be expensive. I also know that time will come. People keep telling me how terrible it is for her to be alone for an hour or so while I take care of business. They tell me how anxious and scared she probably is. Well, hey guys. I’m anxious and scared and have a lot on my plate. If someone is not in our position, they really can’t know what we feel like. I appreciate all of the well meant suggestions but being told off by someone who claims to be a professional leaves me to wonder about some professionals. My wife has multiple doctors and is well cared for. She never had any hobbies except for retail therapy. I’ve gotten her adult colouring books and different things her doctors suggested. Nothing interests her. Not much ever has. I was young when we got married. She actually asked me! I hesitated. but went through with it. Too soon, there was a baby and so on. I never wanted my children to come from a broken home. I think I am a masochist. My work was very rewarding and so I devoted myself to it. She was happy as long as the money was there. Once I had forgotten some papers I needed and headed home 15 minutes after leaving for my office. Surprise! She said to me. There was a hunky guy sitting in the family room. She told me the surprise was that she had a personal trainer. I just picked up my papers and left. I never said a word to her but she knew she was walking a thin line. I should have left then. I didn’t. My girls would have been devasted. I had them in private schools and their life was good. Now I see people criticizing me for leaving her alone for an hour or two. I will see it through. I have to. That woman who told me I was wasting peoples time really hit a raw nerve. Now that we’ve both vented to people who understand, I feel better. I wish you the very best with your parents. My girls are not at a stage in their lives where they could do what you’re doing. I see that you also protect your kids. I respect your dedication. I wish I could say more than “hang in there” but you know I can’t and I know we both will.
I'm just going to address the phone issue since I found a solution that works pretty well for me. Big huge caveat this is in regards to my mom , so we're talking a whole different set of dynamics. Plus who knows how long her lasered-in multiple calls phase will last ( pretty long so far! ) Anyhoo, she has been and always is a TREMENDOUS talker, and calls me constantly. So I:
1) Gave her a special ringtone
2) Realized - and this one is tough - that she is going to feel anxious no matter what plus she doesn't remember how often she calls or what she called about. So I limit my phone pickups for her to once or twice a day. These calls are draining but I DO call or pick up regularly on this 1-2 per day schedule which helps me feel less like an arse and her feel like I have not 'abandoned' her. Overall there really is no way to ease her mind if she keeps forgetting she calls..(fully admit I've had some therapy sessions over my mom's feelings and my powerlessness over them )
3) Calls became more incessant so I put my phone on silent
4) I got a second phone! Second number THAT MOM DOES NOT HAVE. Now mom can call to her heart's content and I can keep the ringer off. When I need to wait for a call for an electrician, etc..I can give them that second number. I'm not tied to that first phone and having to hear it constantly ring , knowing what's on the other side of that ring, which is great!
5) Fyi I got an LG flip for my second phone. Very sturdy. Bad part is initial cost: activation fee plus phone overall was $144. After that financial whack it comes to about $6 a month since it's an ol' dumb phone. This was via Verizon who is the carrier for my first phone.
I'm still agitated with the phone barrage and incessant verbal drama but this has really freed up a lot of mental space.
Truly wishing you the best in this difficult situation!
A second phone is also a good idea. I’m ready to try whatever I can. I just don’t want to miss the one important call where I might be needed. There is a balance to find in order to survive and continue being an effective caregiver. Thanks for your input.
Its hard - closing and selling Moms house (the one I grew up in) , her car (she loved!) and distributing her things - but she is perfectly fine where she is. And with people who know how to manage AZ!! And I don't have to worry 24/7 (of course I do - but I don't have to!)
We all understand.....
NThe doctors don’t think my wife is ready for MC or assisted living. I was hoping to keep our home until it doesn’t matter to her as to where she is.
I have been told that familiar and comfortable surroundings really make it easier on the patient . I can’t say I love her deeply. However, I really do care about her welfare. She gave me two wonderful children. I will never do anything to tarnish my girls image of me. How I treat their mother will tech them what to expect for themselves in their relationships. I suppose it’s selfish of me in as many ways as it is positive.
I love my work. That said, I can transfer a lot of my emotions by channeling them in to productive areas. I also want to be able to leave my girls something should I pass earlier than expected. My heart goes out to you in having to sell the house you grew up in.
What I haven’t been able to explain effectively is that she functions too well to be in a home. We still go out to dinner with friends and have a few over for dinner from time to time. She dresses herself, showers, toilets and all of that. What I see most are the repetitive questions, losing things (like her glasses or a jacket or whatever) and the endless searching for them. She can go to the fridge and get out everything needed for a sandwich. The problem is that she gets confused in putting it all together. She also shadows me or comes in to my office and sits down on the couch and wants to chat while I’m working.
The other day, she walked around our cul de sac and two neighbors brought her home in their golf cart. I have no idea why they picked her up. She can’t go anywhere unseen from the circle and neighbors have been told what’s wrong. I hated telling people (she would be embarrassed knowing that I’ve done this) but I thought caution and extra eyes were more useful than my need for privacy. Thanks for your input. Every bit of information helps me understand a little more than I did.
I just read your response to my earlier post about your age. Yes, you are pretty young be dealing with this. I started managing moms care in my mid 40's and now in my mid 50's feel like I have aged substantially from the stress of it all The first couple of years she would call me at work with the craziest of stories. Someone was shining lazers into her bedroom and she couldn't get any sleep. Or I just let a man into my house and he gave me a pill to take and I woke up in my bed. Or there is a gang of kids that are stealing my mail out of my mailbox, etc... Once you hang up from phone calls like that, it's a bit hard to just go back to work like nothing is wrong... so I understand your mounting stress.
The doctors that you took her to only saw her for a very short period of time and maybe she was even having a moment of clarity when with them, but I assure you she should not be left alone. Some of the posters have great ideas about a nanny cam and turning off appliances, separate phone just for her calls... Those things might buy you some time for sure. Sounds like you're doing many of them. So the type of dementia she has is Alzheimers? We think my mothers dementia was caused by taking Benadryl every day for years to deal with her allergies. This type of dementia seems to progress slowly. She wasn't right back in 2008. I have had her in assisted living for more than 6 years now. I met with a doctor who did research on drug linked dementia. He said don't take anything that turns your brain off...no sleeping pills, no allergy medication like Benadryl, etc. You can actually google the list of drugs that have been linked to dementia.
I certainly understand the financial struggle. Your lawyer is correct in that you aren't alone and this is very common. My mom is in the same boat in that she makes too much to get assistance but not enough to pay for her care. Right now I supplement what I can and have sold her house and car (neither were paid for) so that she has a small lump of cash to add to her monthly pension to make the assisted living monthly payments. No one knows how they will go and you can plan all day long and still may never pick the right route to cover your situation. I'm sure you and your wife never dreamed that you would be dealing with dementia in your 50's.
I just scrolled down and read a response you made about the relationship you had with your wife. That's horrible that you didn't have a better marriage. I think when the relationship was bad before the illness, it makes that fact that you now have to care for her feel like salt in a wound.
Ignore the woman who was shaming you on this post. This is a safe zone and you can feel anyway you want.
As you can tell, none of us have the answers...we have opinions, suggestions and of course our own sad stories to share. I hope you find it cathartic just to talk it out with those of us who understand your struggles.
Please keep us up to date on how you're doing and just like they tell you on an airplane....put your own oxygen mask on first before helping others! Take care.
Thanks so much for your uplifting post. I appreciate it very much. The doctors didnt see her at a particularly good or clear minded time. If I am correct, she had an fMRI. She seems normal in so many ways. The areas of her brain that are compromised are not in a usual pattern, therefore she can still function on certain levels.
She has always asked others to do things for her. I ask her to do simple things around the house to keep her from being bored. She will start vacuuming and tell me to take over (as she always has). I never wanted conflict around my girls so I just let things slide.
I know she didn’t honour our marriage vows but again, she is the mother of my children and I dont want them to suffer because she is sick. I have a responsibility and I know this. I’m not necessarily the good guy here. I am just a responsible person and a dad that loves his daughters. There are times when I feel like running away but reality is that I can’t. The girls have taken care of her a few times when I’ve had to be out of town for a week or so. That doesn’t happen often. She can be very demanding and the girls have a hard time with that behavior. It is not how I want them to remember their mother.
Thank you for sharing so much with me. I have tried paying a few qualified caregivers a couple of times. Everyone online seems to think it’s nevessary. Even if I’m only gone an hour and a half, I have to pay for four hours. Then, to make matters worse, she is upset and angry when I get home. Last week it cost me almost $200 for being gone a total of 4 hours over a 2 day period. I was gone in 15 and 30 minutes increments on those days.
We have too much income and too many assets to qualify for any help. Yet, on the other hand, I do not have enough to spend a few thousand a month and still prepare for what’s to come. I want to be able to provide a good MC facility or good home care when it is time. She asks me to turn her shower on and off. I know she can do it as Ive watched her when she thought I was asleep. All I can say is that she has always felt she needed people to do for her. Two separate doctors said it’s not likely that she will stop expecting that.
Had we divorced all those years ago when I wanted to leave, someone else would be in my shoes. Perhaps it would
be someone madly in love with her? She gets treated well now and I have figured I’ll be caregiver for most probably another 5-7 years. They say people can go on for twenty years with this disease. I just want everyone to be happy and things to be as normal as they can for as long as they can. The phone calls are still invasive. When I ask her to stop and only call if it’s important, she says okay and calls again! She wants to know where I am every second of every day. I read about others here and many have things far worse than I do. I am grateful for being able to vent here. Thank you again for your non judgmental comments.
I don't think it matters what anyone tells you but her doctors, if they say she is fine to be left alone for short periods, then she is fine to be left.
Have you thought about a housekeeper, someone who can come in and clean the house, do laundry, maybe throw a meal into the slow cooker once or twice a month. You would be surprised how much help a twice monthly cleaning can be.
Have you contacted the charities in your area? I volunteer for one and it is not ever based on income for someone to come hang out with your wife. This could give you a couple of breaks a month. If you find the right person your wife would probably not even miss you. Speaking from personal experience with elderly people that had separation anxiety and I found ways to engage with them to give their spouse a worry free break. I have fallen in love with some of them and I will help them when they need me, no charge.
If you have to have an aide come in and it is a minimum, take advantage of the time for you. Go to lunch, go for a walk or anything that helps you relax.
Another thing that I think would ease your mind, your daughters know exactly what their mom is. You are not protecting them from anything about her personality. She raised them and they know, whether they say anything or not, they know what she is. Stop worrying about that, it is okay for people to understand the realities. They are probably trying to protect your feelings by not saying anything.
There are many charitable organizations that can help you and are not based on money. Spend some time calling catholic charities, jewish family services and other social service resources for community services available to help you have some space from this situation.
Remember that you matter and you deserve to have something in your life that doesn't revolve around your wife, even if it was a wonderful marriage it is simply to much for 1 person to deal with 24/7/365.
I love your advise
Yes there are places about
I currently look solely after lifetime girlfriend who has been diagnosed with early onset dementia
We are both 64
Originally she moved here to buy a unit in my area ....after living. With her sister for 3 years
During the process of buying she had a meltdown. ...she wouldnt come home some nights. Had psychotic episodes ....then started being incontinent
Her family think i may have triggered something but if truth be known she has never lived alone before nor married
Anyway ive done my best taking care of her
Taking her to drs. The works
My question is. She has changed a bit
She has always been lazy and addicted to her mobile and tv
But now she is spiteful
I try and encourage her to keep busy
But she refuses to get out of bed somedays
She knows we /she has appointments or similar but dosent care or if she does takes hours to get ready.
She can be very cunning and lies to me which i get very disappointed about
Im wondering is it really dementia or a psych condition
And why does she shoot down and wear me thin on purpose
I love her dearly. Been friends since primary school
She is bright. Can do her own banking. Use the computer. Shower cook everything else
But hates giving me a hand with household stuff.
My dr told me im not well enuff to care for her but do.
Hope this is making some sense? Gulp
Am i being used like friends who know and see her suggest and i feel... where /how does dementia show its real ugly head
She has tons more stamina then i
If im asleep she goes thru mt private things
She is not the friend i have had for over 55 yrs
Just curious and feeling a tad used at the minute
Merry Christmas
Cheers