HI! I am new to this group and thought I would post an intro. My husband was diagnosed with EOAD one year ago. He is no longer working or driving and has difficulty with his memory and cognitive abilities. He is now 47 and I am 41 and we have 2 young children. My oldest is 12 and is Moderatley Cognitively Impaired and needs lots of attention for medical issues, etc. My youngest daughter is 9. I work full time as a special needs teacher of 3 and 4 year olds and I feel completely overwhelmed with my life right now... that is why I am seeking support. Right now I am struggling with how to keep my husband safe. He seems to be in denial and wants to continue to do things as usual...such as use power saws, etc. When I mention that this might not be a good idea anymore he yells, calls me a control freak and says he might as well be dead... how do you limit things that your spouse use to do that might not be ok anymore???
Welcome to this wonderful site but sorry you have to be here. I can't be of help with you regarding stopping your husband from doing things as you describe. My husband is 59 and has FTD (frontotemporal dementia), I am 50. As my husband was never a handy person, tools are not a problem. Have you applied for Social Security Disability?
Hopefully having SSDI will at least take some financial strain off of you. I hope your children are doing okay. They are so young. I have two grown children and I know how much of a load it has placed on them as their father is slowing disappearing.
Welcome to our group jij. There are lot of EOAD caregivers on this site who can give you a lot of advice. My DH is 74 with Parkenizm with AD and VD and Spinal Stenosis so he doesn't have as much energy as a 47 year old. I feel greatly for you but it looks like you have the background to deal with this situation. However, you can only control so much and they REALLY do rebel. Yesterday, I wrote about my DH locking me out of the house after I wouldn't give him back the tractor keys (which he had put in his pocket and forgot about).
You are going to have the same issues as me plus all the power tools. The Neuro's told me early on that he should not be operating ANY power tools, lawnmowers, week-eaters, chainsaws. But easier said than done. I have removed and hid the car keys over a year ago. He is physically unable to use any of his power tools or that would be a big issue for me too. I have no idea on how to advise you. I can only sympathize with you and hope someone else here can help you.
Do keep coming back and posting because it does help to share. (((((hugs))))))
Perhaps having an outside person, your counselor, clinical psychologist, or doctor, explain to him that his reflex actions are not as sharp as they once were and suggest the more dangerous tools be set aside. They don't want to be told repeatedly it's a "brain thing". I've used excuses such as mobility, knee problems, etc. early on to discourage him from leaving home (walking) alone, and he was more able to accept those limitations than anything that mentioned his brain! They will always listen to others more than they will listen to you!
Hi Jlj-welcome. so many EOAD! you are very young and small children that makes it double hard. my DH never had tool issues either only a pilots license! hah. that was plenty hard to get away from him and i had to literally sell the plane from under him. you will need to remove anything that could be a danger to him. they just cant be trusted to function like before. some used the excuses of someone must have 'stolen' them out of the garage.. i hope you get some free time to browse the site there is alot of handson advice and info from veterans and new members who have walked the walk...divvi
Hi Jlj and welcome to my website. As Divvi said, soooo many EOAD. AD is tough enough, but being so young with children at home and working is a triple burden.
Please log onto the home page of this website - www.thealzheimerspouse.com - and look on the left side at all the resources. Click on EOAD, and the two sections under it. The EOAD section is full of articles and videos of young people like yourself dealing with EOAD. The section under that one is a website for young teens of parents with EOAD - a place for them to connect with other kids who are going through the same things as they are. I think it will be appropriate for your 9 year old, but check it out first. The section under that is about a Camp (funded by donations and sponsors )for youngsters of EOAD parents. It was started by a young mother who was diagnosed with AD at the age of 38.
Also, click on the "previous blog" section, and I am sure there will be many topics to which you can relate. We are all spouses, all struggling with our emotions, this devil of a disease, and the stress it causes.
I update the home page daily with new blogs, news, information, and resources, so check in often. I know you will find the support and information you are looking for.
In one of Joan's recent columns she mentions a mediator and I think this is just one of the type of situations (caregiver vs patient, severity of the disease) where it might work.
I have seen Joan use it a couple of times in her writing, involving a third party to intervene on driving and medication for rage issues and I use it myself.
I am the evil person in our relationship, there is nothing wrong with him and it I am the one that causes all the problems. I am trying to control him everytime I try to limit something that might be dangerous. Yet he is fairly compliant and agreeable when others tell him things. If your husband is similar, I would use this same technique. Have a third person kindly intervene and tell him the things he is not allowed to do and what he must do (get rid of the tools). Have it come directly from that person, with you saying nothing. Notify the doctor ahead of time in writing if you need the doctor to make the list.
Also, my DH struggle more with verbal instructions at the drs office. The day after we've been, he claims the doctor never said the things that he said. If this is the case for yours and he can still read, ask for all instructions in writing. I do this all the time with much better results. Have the doctor write, "Do not use power tools. Sell, donate or give away your power tools to those who will use them." Then all you have to say is Dr says we need to get rid of the power tools, who do you think we should give them to? Then when he says the dr didn't say that, all I have to say is go get your list that the dr wrote and lets check it.
THird party stuff is good. It also may be that you need to do a bit of "theraputic fibbing" - say that the doctor is concerned that your 12 year old might try to use the power tools and hurt himself, so you want to lock them away .. and then "lose" the key. Approaching it directly will probably NOT work well. I've found it has sometimes helped for me to be the one who did something "wrong" .. not by nagging him but oops, I lost the key. My bad!
Good advice Catherine. My dh also listens to others better. I don't even have to have a list. I can usually just tell him verbally the Doctor said he could no longer use the power tools or drive. That he was worried about his reflexes, etc. Make up something. I threaten him with the "Police said he could no longer drive as did the Insurance Company and he didn't have Insurance. I even told my Mom one time the Sheriff would put her in jail if she done something. My hb listens to a son in law, who can use all equipment and tools pretty well most of the time. Other times he tells me the son in law he doesn't know what he is talking about. I do a lot of threatening. I have full family support which is very valuable and I know a lot of you don't.
Then there will be times he won't listen to anyone and you just have to wing it the best you can. Like last week when I was locked out of the house and a little worried about my safety and called adult grandson to come check things out for me.
jlj, welcome! You have been given good advice from the others here, so I can't think of anything to add. I'll just keep you in my thoughts and prayers. I also hope you can get the electrical tools either hidden at a neighbors, put in an offsite storage unit if you use them and want to keep them for after; or sell them. Then again, they can still take a screwdriver and stick it in an electrical outlet like mine did! We can only protect them from themselves so far. Best wishes to you through your journey with this disease!
jlj, Our neurologist writes notes for us, this way he cannot deny what I am telling him. Also many of us have had great success with a drug called Seroquel for use when the anger, outbursts get to be too much. Like me, you must keep in mind the toll it takes on the kids. I feel you pain, confusion and frustration. I'm 53, have 3 grown kids and am raising my 9 yr old grandson who has pre-frontol lobe deficit. He is a sweetie, but requires a lot of attention and is very easily upset. Do you have a safe place where you can put the power tools? Maybe a shed, a neighbors, etc.
jlj, welcome here to our cyber security blanket. I am so sorry you are dealing with this at such a young age and with two small children. On getting your dh to leave the power tools alone.... Well, we all do what we can to stop this. We lie, we lose things, we disable things, we hide things... Without Concience! You will learn this is a good thing sometimes, for their safety and your sanity. I had an incident not long ago with a power saw. If you have a gun in the house, please see to it that it is disabled or lost. You have come to the right place...M