When we were married 48 years ago, my husband and I divided the duties as our parents had: the yard, trash and cars were his responsibilities, and the cooking and cleaning and shopping were mine. I WANTED him to be responsible for the checkbook, but the Army kept sending him off when the bills needed to be paid, so he gave it to me. I had that duty from then on as well. Since he was raised in a Ford family, he wanted Fords. I was raised in a Chevrolet family and wanted Chevrolets. We decided that he would chose the first car (and his uncle owned a dealership where we were living at the time) and he got his Ford - a 1962 Ford Fairlane. The next car was mine to choose - five years and two kids later, and frankly the Ford Country Squire Station Wagon was the greatest thing on the road for families. We got three in a row! And we got him a new Pinto when he came back from Vietnam, because by then we needed two cars.
We had a great partnership. After dinner, he would play with the kids and get them ready for bed while I cleaned the kitchen (my choice - I had had the kids to deal with all day while he was at work!). We decided all major decisions together. I could count on him for everything. Until AD.
Now, every decision is mine to make. No one to talk it over with. No one to run ideas by. No one to help fix anything. No one to paint a room with me. No one to discuss a good show or movie with. No one to be there for me.
And on top of that, I have the total responsibility for him as well as myself. It's like being a working single mother with a handicapped child to take care of.
I really miss my best friend and partner. This sucks.
We've been together 31 years and I have always taken care of the finances but he used to take care of the cars, lawn, any home repairs or dealing with the proper professional who came out to fix something. Everything is now mine to handle. His biggest worry is what he is having for his next meal. I went to my PCP today and she upped my antidepressant to see if it will help me sleep better at night and not have my mind racing along.
I try hard to put those thoughts out of my head - they're too difficult for me to deal with right now, but honestly, you said it all, and it made me cry.
We are all in the same boat, aren't we? How I HATE having to do everything myself. And nol having anybody to talk to unless someone stops in. Sometimes I get so tired of people asking how he is.
Mary: Well written and well put. I really pick up with your third paragraph and the 'rest of the story'. Except, it is my wife and I am facing some huge decisions that she can't understand and 'no one is there for me'
Thanks for writing your thoughts. They really help me.
Dean PS: I intrude on these ladies regularly and they are very patient with me.
Well said Mary. We can all relate to everything you mentioned. I so miss having someone to share news (good or bad) with. I also did all the finance and bill paying so nothing has changed there. Right now he is in a Rehab Hospital and I am understanding the aloneness Gourdchipper talked about. The house seems so empty and hollow with just 1 person. I haven't cooked anything for 10 days.
Mary--I have thought about the same "working single mother of a handicapped child" metaphor thousands of times since this ordeal began. It is the closest comparison I could come up with to being an AD spouse. There are differences though--I bet those mothers get more help and support than most of us do. People's hearts go out to children with handicaps--because they are children. What has happened to our spouses, well, people may feel badly about it, but most don't recognize that the responsibility we have is practically overwhelming.
Ditto, ditto, ditto. This a.m. as I was talking w/the man who came out for an "after hours" service call to change thermostats in the water heater that I can empathize w/single parents with small children. Some repair persons or even "wait persons," cashiers, etc. seem to wonder why I do all the talking lol.
I tell all the repair people who come, as soon as they arrive that DH has AD - so they have to deal with me! So far, they have all been so nice to him and will take the time to talk to him a little before they leave. And they let me watch what they are doing too! LOL I've learned an awful lot.
I always made it a practice to try very discreetly informing all persons who came to work on the home that DH had AD. "MOST" of the time it was met with sincerity and compassion, and 90% of the time these folks had an immediate relative going through AD as well. A couple instances a worker didn't fully understand that DH shouldn't have been giving approvals for work/costs, etc.
Mary, I felt every bit of your frustration. I worked full time after the kids were born, and after early retirement DH was the stay at home Dad except those periods (3-9 months at a time) that he was called back under contract to fill temporary needs for the corporation. I very soon learned after our marriage that DH was very lax at making sure bills got paid. He had the money....no problem there. He just didn't see the importance of paying by " due dates. " Once a month or so he'd sit down and look through his mail (utilities, and stuff like that...car and home however was a different story.) Gradually I took over all the bill paying. As DH progressed into forgetfulness and poor decision making I took over the bills entirely. He also had no discretion when it came to door to door sales, phone solicitations, etc. Little by little I had to get his cards away from him, and his check book. So I have to say, the total transition of me taking over all the responsibility had been gradual over a very long period. It is when he could no longer help cook, get the trash up to the road the night before pick up (ours comes in the wee hours), drive, help around the house, pick up anything at the store, and then needing help from me with his every day grooming and needs, welllll..................that is when it really began to hurt. That is when it really was hitting home that the guy who treated me like a princess when we first married, kept our yard immaculately landscaped, the guy who could handle taking two toddlers alone to the grocery store and to toy stores (I couldn't even do that so patiently)...was gone from us.
I feel like I am doing the job of two people. No wonder everyone says things come better in pairs. We use to complement one another and what he couldn't do I could and what I couldn't do he could. That isn't the case anymore. It is a lonely job and kind of thankless at times but if we didn't do it, what would happen to them? I don't even want to consider it.
Mary, the having a handicapped child to care for fits the bill to a tee. all the responsibilities and work load on are on our shoulders. choices thatare made-good or bad- are still ours to mull over alone. i was lucky to have always been the one to handle financials. DH forte was making money not investing or saving.
like you all say, nobody to share with- any and all obligation must pass over their heads onto ours. yes its sad and it sux bigtime being alone and having so much responsiblity. divvi
Wow! Mary I can so relate to everything you said. And you said it so well. I miss having a partner to discuss things with. We use to have such a fantastic relationship. I couldn't wait to get home from work ... just to be together. He made everthing fun. Our evenings flew by ... we really didn't need anyone else. Now, I feel so alone. It's strange. He's there, but in body only. Now, the only thing we share is meals. There's no real conversation. I can't share any of my day with him and he certainly can't share anything with me.
It's scary to be responsible for every single decision regarding running a home. I also explain to all service people that DH has AD. True, I've become so much stronger. At this point I feel I can do ANYTHING. The problem is, I DON'T WANT to do everything. I want to be taken care of sometimes. New Realm, I too miss the guy who treated me like a princess. Not that he handled the finances ... I always did that, but I knew that whatever happened he was there to protect me, or cheer me up, or make me feel loved. My DH is a former Green Beret. He could handle any situation. Now it breaks my heart to see him so hunched over, shuffling his feet across the floor, struggling to find the right word, forgetting he just had ice cream, insisting he just showered, etc.
Yes, AD sux big time ... and it's only going to get worse. Thanks for listening.
Yes, PatL, it is only going to get worse. And when will I remember NOT to tell him certain things??? I try so hard to keep his stress level down (not necessarily mine!). But when I found out yesterday that my son's health insurance was being cancelled - I told DH. He went ballistic. Was going to call OUR insurance agent (home/auto); they would do something....blah...blah...Thought I would never get him calmed down. We were sitting on the porch and a neighbor came by - thank God! After he left - DH never mentioned the insurance again. Distract, distract, distract....But it's so hard to remember NOT to discuss certain things with him. God help us all.
All of the above..wow..I still find it amazing that the symptoms are so universal..what happens with one..same for pretty much all. I need to learn not to mutter to myself about chores, or anything really, as he picks up on it immediately and is often out the door trying tro "fix" it...usually to my despair. Odd, I never thought I talked to myself that much, but am learning that is not the case. He can't/won't hear normal requests or comments, but the mutters come through loud and clear!
Kathi37 - That's so true. My DH doesn't hear me most of the time. I always have to repeat what I just said. BUT, yes, he does hear mutters when I talk to myself.
bluedaze - Thanks for the laugh. I can relate ... talking to a squirrel.
Vickie - I also made the mistake of sharing something I shouldn't have, and he just couldn't stop talking about it. I won't make that mistake again.
I must say it is comforting to know I'm not the only muttering soul in this crazy life! I truly did not realize how often I do this, but since it is so noticed now, I'll have to watch it or who knows what hell will come down.
It's hard to break that habit of casually mentioning something to them but it seems to get me in hot water every time. My stress level is always higher when I've got something going on -- like right now new legal documents being drawn up, trying to figure out when and how to approach him to explain and go to atty to sign. Besides having broken reason buttons they have a short in their reception buttons. Sometimes he'll take information just fine and at other times he will blow a gasket -- never can tell who is at home inside is head.
That reminded me that one thing DW and I did together, which amazed many people, was to wallpaper rooms together. We really had a good system worked out and really enjoyed doing it together.
There's so much we have lost with this horrible disease.
I used to think that as long as there were two of us and we could take care of each other everything would be OK. But that is gone now. And it is scary.
Not only do I have to take all the responsibility for everything and DH has no idea what it takes to run a household with a 5'''7" - 4 year old, but somehow he thinks he is still in charge and loves to tell me what a jerk I am and that I could not possibly understand how things work. I always wondered how he thought I got through the day without him when I went to work for more than 30 years of our 48 year marriage. I have never told so many falsehoods and did the kind of sneaking around in my whole life (before AD) as I do now. I have to say, it really keeps me on my toes.
MY DH of 18yrs is in there with the rest of your LO. Here's a thought---------let's all pool some $ buy a lottery ticket ! If we win we could buy land (it is cheep now,hehe) build our own community and have a very LARGE alz.unit that we are in charge of! Just a thought.lol
It's hard to break the habit of deciding things together even if now I am talking to myself. It gives me something to say. AT THAT MOMENT, it makes him feel useful and part of the process, even though we both know he will forget whatever was said. Sometimes he still comes up with good ideas, which he forgets, but I don't.
bookworm, my husband also thinks he is still in charge, that I know nothing, and that everything is still his responsibility. Some of the time it drives me nuts. By the way, he generally wasn't all that in charge or all that responsible in the first place. And I always knew what was going on.
ARGH!! I wish G would STOP trying to share and fix things. He decided (unknown to me) to clean the furnace filters, which he did, but then left them outside with the furnace turned off all night. BRRRR. When I discovered them, I replaced them, then noticed our water heater had a puddle of water a round the base of it. I'm not handy at all, but guessed this was not a normal situation. He insists he is going to replace it just like he did last time. When he gets something in his mind like this, battles begin. I did some calling and found out basics to deal with on Monday..such as 12 year warranty, but no paper work...so..$800.00 for a new one installed? Makes me ill, but I should have been there over his shoulder five years ago to grab the paper work that he always tossed...but...he still says no plumber. It could be a long week..and the home nurse is coming in the morning to evaluate him for our LTC insurance. Fine times coming.
Kathi37...check the model and serial nr on the water heater, and call the company....I did this several years ago, and they shipped me a replacement ...I had to pay to get it connected, but the heater was free...also, the water puddle could be from the pressure overflow valve, or from the cold due to the furnace....you may not have a bad water heater...perhaps just a leaky shut off valve?? or other leak?? sure worth investigating before spending 800....which is high for a new heater....a 40 gal elec heater costs about 250 at home depot, and another 100-150 to have it installed......anything more is robbery...
I used to worry about the insurance nurse doing the eval for continuation of LTC. I stopped worrying when she attempted to administer the MME to my then stage 6 (now 7 ) husband.
Kathi37, listen to phranque. Last Saturday I noticed we had no hot water and base of water heater was damp and water was dripping slowly from overflow. Two new thermostats installed by nice young man from REMC. $50 for his weekend visit. REMC provides free water heaters here (40 gal) or a discount on 80 gal. Used to install them, too; but don't install them any longer but do service them. REMC = Rural electric ? company. Electric co-op in rural areas of IN perhaps other places, too. Thankfully, hb is beyond pretending he can fix anything now.
A cousin-in-law stopped by this aft. Her hb, my cousin--a mega-acre farmer, passed about 3 hrs ago (age 63) from cancer. She said she's heard discussions of whether it's harder to watch a loved one leave slowly with a disease like cancer or slowly with dementia. A woman at church lost her super handyman hsb at 85 this year to cancer. He was sharp as a tack and answering "how do I fix this" questions accurately to the end. The consensus is, it's easier/better to have them mentally with you helping solve problems and share responsibilities.
Phranque, thanks for your input. This is a gas hot water heater from Home Depot so I'm calling GE in the morning to see if the warranty holds. Not counting on it, however, since I haven't the receipt. Our local plumbing spot (not HD) charges $250 to take out old install new. I have no way to pick up a new one or get rid of old. Hate this situation ,but we gave our son our trailer when he bought our Dodge pick up, and he lives far away. We'll see what tomorrow brings.
I did call HD, but was referred to the GE hot line. Had our local plumber out this AM, and he feels it was the connections and not the appliance itself. He replaced everything..and with a smile..he has rescued us more than once. Now it is wait and see if it is fixed for sure. $135 is FAR better than $800.00!
Funny, I was just feeling sorry for myself this morning because I had not one, but two flat tires on one vehicle, and the other had a dead battery. Last week one of our kids was sick, and has been home from school, and I was sick myself. My hubby, whom I used to rely on to do all they 'guy' things, now can't remember what I've asked him to do 5 seconds after I ask him. I try to give him 'useful' and easy tasks to do around the house, but, honestly, it's just easier to do things myself, rather than explaining things over and over and having him bite my head off because he doesn't understand what I'm asking. I've gone from being married with 3 kids, to having 4 children in my home, and it's killing me.
Thanks for letting me get this off my chest, and while I'm glad I'm not the only one, it really does suck that we're all going through this.
Welcome to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos. I highly recommend reading the section "Early Onset Dementia - A Practical Guide". It is excellent. Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
Welcome. I hope you find the support and information you are looking for.
Thank you all for the warm welcome! My husband is 54 w/EOAD, and we have 3 children, 11, 5, and 3. I've been getting a ton of support from the Alz. Assoc message boards and chat room, but when I came here, I felt so understood, and I know I'm not alone. I look forward to meeting and chatting with you all and sharing our experiences together.
Welcome, dsm. I had the exact same experience with the Alz. Assoc. message boards and the difference when I came here. Glad you are here. (My husband is 62 w/Alz.)
OMG--Here I am out here in the beautiful Pacific Northwest thinking I'm the only one with all this 'stuff' to do. My DH doesn't talk to me much anymore and we used to talk every day for several hours about this and that. Making plans, decisions, etc. He can still talk but he mutters so badly I can hardly understand him. Also, he watches TV almost constantly and he has the volume up so loud that it's impossible to even ask a question.
I'm sure he has a hearing loss but getting him to admit anything is wrong long enough to get him into an audiologist. He wouldn't wear hearing aids even if he had them.
I'm having a terrible time with my eye sight so I've had the bills put on line and let the bank take care of them.
The switch on the furnace went out and I was so proud of myself for getting the furnace guy out to fix it. Then I bought a couple of filters (saved one for later).
He seems to be getting quite sensitive. If I ask him to turn the TV down, he acts hurt. I feel I have to remind him to change his underwear and that upsets him. I did laundry today. I had 9 hankies, 6 pair of socks, 6 t-shirts, 1 pair of shorts. Yet he insists he's changing every day and accuses me of hiding or throwing out his shorts
He flat out refuses to make a decision of any kind. I guess he can't make them anymore.