After 3 years of hell, financial disaster and separation my husband was diagnosed with FTD. I brought him home. I want to take care of him but I am overwhelmed by the chaos, the hoarding and the mess. I can't try to organize or clean because he needs to be with me every minute. Although everyone says they want to help no one does. I have literally begged people to take him for a few hours to give me time to clean. In four months it has only happened once and then only for a half hour. I can't live in thus filth anymore but I've lost all ability to try and fight the mess. How do you do it? How can I find a way to find my energy? How can I work around his demands?
Coming to crisis points is common in what we try to cope with. We get pushed beyond our limits and then try to figure out how to keep going. At one point I gave up worrying about the mess and trying to keep the house the way we used to. I couldn't keep that up while I was dealing with everything else going on.
There are no real solutions beyond finding our way through the changes the disease brings and you will see this board is full of people in the same boat trying to get answers to their problems too. It's what we do around here.
It's horrific what we go through but you will find that here you can speak plainly and fully because everybody here gets it or is learning. Those people with a * by their names have lost their spouse but continue to be involved.
You will find too that most of us are disappointed by what those around us do in the way of help or support and many have active problems caused by children, family, and friends where many don't cope well with this.
The only thing I can suggest is make sure you have been clear in what you need to anyone likely to step up. I need you to take him for 4 hours. I need this help. Can you and when? Look them in the eye. If they won't then let that go because it's not going to happen and you don't need more stress. Next can you pay for someone to take him? Find out what's actually available and how much it costs. Maybe you can get 4 hours once a month in some arrangement whether it is taking him to a place or having someone come and supervise him.
What specifically are your options in your situation? If others won't help watch him then ask them to find this out for you. You're likely to get the best answers yourself. What FTD support is there? Can they help point you to other sources of help. Even though you're understandably under stress already the truth is you need to get ahead of this when you can. Finding out what's really available and how that works is going to come into play.
Anyway, I'm sorry you are facing this and I hope you can find a solution.
Sorry to here about your DH. My DH has bvFTD but he is a money hoarder, but he is very clean and orderly, so much so that he gets nasty if things are not done his way and at his time. Even in the LTC he harasses them about any food on the floor of the dinning room. I don't know what your financial situation is, but could you afford to take him out for the day and while your gone has a hire a cleaning crew to come in and get the job done? I realize that some of us prefer to do our own cleaning, but in a situation like this maybe this would help you at least live in a clean home. Also, is there a day care that he could attend giving you that time for cleaning and to do something for you?
Is Adult Day Care an option for you? My DH as both FLD and Alzheimer's. I had to get him qualified for Medicaid and then he qualified for something called the Elderly Waiver which covers most of the cost of of the Day Care, I am 56 and still work full time. My DH follows me around as well, I have been able to get him to work on Alzheimer puzzles 36 pieces takes him about 4 hours I am with in ear shot and I tell him I need the puzzle done to hang on the wall and them I try to clean while he does that. Also have him fold towels over and over , sometimes he will sometimes he wont. My house is always a disaster as well. There are no easy answers, I have had to let my standard drop and just survive. Sending Hugs your way.
My husband doesn't want to be with me all the time, so what worked for me may be of no help to you. But just to put options out that that might be helpful to someone, what helped me was setting up two rooms and a bathroom that are his and his mess isn't allowed in my space. And I hired someone to come two days a week and help him and clean. He entertains himself with TV and computer so I didn't fight day care. But I'm getting close to not being able to keep him home. Things that I thought ahead of time I would be able to do are just too hard.
Since I don't know anything about you or your husband or where you live..this might not help out.But My husband goes to the Senior center where they have a daycare just for people unable to be left alone. He only goes a day or 2 a week but it is a blessing to have that time to get things done. I know what the feeling of having them be glued to your side mine did that also for a while, even when I would iron he would sit at the end of the ironing board..Now he just sits in front of the TV..so whatever cleaning I do is just sort of done around him. hope you get some help soon! hugs coming your way from WV.
Hi Undra, my husband has FTD and after almost 6 years since diagnosis (at least 3 before that) I have given up on having a neat, clean and organized home. I's just not possible with my spouse. I do the absolute necessary cleaning (bathrooms, fridge, stove, kitchen) and occasional vacuuming but no sooner do I clean than something happens (like he takes all his clothes out of the closet/dresser or he decides to urinate next to the bed, etc.). Since there's no way to predict it or control it, I let it happen. Worrying about it just stresses me out and I start to yell at him, which creates behavior problems.
Possible solutions to having time to do what you need/want to are a local senior day care center, paying someone to take him out a few hours a week, you taking him out and hiring someone to come and clean. Check with you Area Office on Aging for what local resources might be available to you/him, the Alzheimers Association local chapter and your place of worship which may have people willing to volunteer to take your husband out for a while or provide other support. Based on your post, you might qualify for reduced fee or free services depending on your financial situation.
We learned early on that no one was willing to help even though they said they were. In fact we no longer have any friends or relatives who stay in touch...only my sister. No one in his family even cares if he's dead or alive. Wolf gives you excellent advice about how to ask for help from those who said they would. But beware, don't be disappointed if they don't volunteer even after you've made a specific request.
Thank you all. Your quick responses made me feel less alone. Although this behavior has been going on for four years we just got the diagnosis this week. I will keep your comments in mind as I search for a way to manage this. I am sure I will be reaching out to you soon. Thank you again
Like your situation, there were years of behavioral issues that preceded my husband's dx of FTD. That dx took a long time but when it came I was undone. You might think that the years of bad experiences would have gotten me accustomed and prepared but I was in denial and it just did not happen that way.
At the time of dx finances were slipping but my mind was just unable to process anything other than day by day. We never spent much on stuff but instead on travel and services. Until, I guess, that all became history.
When we came home after that dx meeting, the one where the neurologist was ready with the display fMRI, really ready with all the little arrows and circles to illustrate what was happening, I just lost it. By this time my husband was already apathetic. Her words though, finally cut through the thick clouds surrounding my head. So, I held on through the appointment and the drive home.
(paragraph deleted by me- TMI and no one cares anyway)
I am so very sorry you had that shock just last week. I was going to say that I can't imagine how painful that was but I can. It hurts beyond words.