Last two weeks DH almost burned the house down (stood in kitchen with pizza box that somehow he caused in to catch on fire with a lit candle on stove (NO MORE CANDLES) and yelled for my 12 year old asking what he should do! Wandered at 6:30 on a Friday night and walked to a Dunkin' Donuts across a very busy city street, walked out of the house Christmas Eve in the rain and is literally making me so unhappy and feeling so trapped. He is at the beginning of Stage 6. Incontinent at times, confused, either sits in front of the tv all day, paces or follows me around. As some of you know, I am trying to save his small business that because of his disease has been suffering over many years. I am also dealing with outstanding tax debt and environmental problems with a building he owns. I have a 12 and 11 year old that can't have friends over, cousins sleep over etc. because DH is overwhelmed. I am praying that God takes him in his sleep some night soon because I cannot endure what the future holds with this disease. I know it's not his fault, and I feel guilty, but I am at the end of my rope. He is taking many walks lately - always finds his way home, but is this classified as wandering? If I am so beside myself at this stage in this Alzheimer's game, how am I going to survive what most of you are dealing with on a daily basis in the later stages?
Off the top of my head, I am thinking that what you need to do is child-proof your home as you would for a two or three-year-old. Flameless candles, hide the matches, sharp knives, power tools, etc. Get rid of the lawn mower and hire a lawn service, etc. Put locks on the doors so he can't get out. He sounds appropriate for some kind of adult day program, which would help you have time to manage your family business issues. It isn't right or appropriate for one disabled family member to ruin the lives of all the rest of the family…those children need good lives, too…although, of course, kids have to live in the real world, and it isn't a bad thing for them to see family working together to help family. (Dad.) I'm mulling over how the kids could have their friends over…obviously the disease is starting to isolate them, as it is you, and while we all seem to become isolated as Alzheimers caregivers, it isn't right that the kids become isolated. Maybe others on this forum who have dealt with this particular issue could give a shout.
Christine, you have so much on your plate with a dementia spouse and 2 pre-teens, never mind trying to salvage your husband's business.
I agree with elizabeth's* advice about childproofing your home. Based on the info you provided, it's my opinion your husband should no longer be taking any walks without supervision, it's too dangerous. Yes, I would classify it as wandering, even though he knows how to get back home. I put deadbolt locks on our doors which require keys to open them and inexpensive alarms on all doors and windows so I'm alerted should he try to escape.
I do think getting him into an adult day program would be a good idea for everyone in the family. It would allow him to socialize with others while giving you some much needed alone time. Your local Area Office on Aging or the local chapter of the Alzheimer's association should be able to provide you with a list of day care places. Perhaps the kids could go to their cousin's house or friends homes to visit, play, sleep over until you figure out a way to have their friends over without upsetting your husband.
On the front page of this website there's info about teens living with a parent who has dementia. Perhaps there are some helpful tips there.
I know this is hard. At this point with my DH, our DD was 16. She spent most of her time with friends at their house. They were all aware of her father. My worry was his coming out into the living room with no pants or some such thing. I know the worry you have. You need a way to keep your DH safe. If you are unable to do it at home, placement may be the way to go. I was lucky in the way that my DH never did leave the house like that. The adult day program is a good start, you need to be proactive. Good luck and know you are in my prayers.
Another thought, especially if a day program isn't feasible, would be to hire an aide to stay with him so you and the kids could do whatever else you needed to do. I don't know how your house is set up, but maybe the aide could sit with him in the den watching TV, or go outside with him when he wants to walk, or go to Dunkin Donuts, or whatever. The kids and their friends could be in a different part of the house, and so could you. (Obviously you'd have to be there when the kids had their friends over.) Or maybe while the aide was there, you and the kids could go out and do a fun activity. I realize an aide isn't cheap…sigh…as we all know, this disease costs a fortune, both directly and indirectly.
Hi Christine, The best advice I ever got was when my husband was in the early stages of this disease. A social worker told me, “You have to take control of this situation because if you don’t, it will take control of you.” That is the same advice I have for you. I would also ask, “What is your plan for the long term?”
You have enormous business-related demands: managing your business, meeting payroll, dealing with tax debt and the loss of real estate you had counted on for financial support. At the same time, you have two young children at home who have schedules to be managed, homework to be supervised, educations to be paid for, etc. And then there is your husband. In stage 6 of EOAD, confused, incontinent at times, home alone a good part of the time, still driving (?), taking walks on his own, crossing a busy highway in the dark, and not knowing what to do when a fire starts.
Your last question is, "If I am so beside myself at this stage in this Alzheimer's game, how am I going to survive what most of you are dealing with on a daily basis in the later stages?" But most others on this site are not dealing with what you are on a daily basis. Others do not go to a business office every day, AND provide for and supervise young children, AND care for a late-stage spouse at home. You cannot be in two places at once. If he is still living at home as his disease progresses, and if he is not in day care, how are you going to continue to spend your days at the office? Will you be hiring a full-time aide? Or will you hire a manager for your business and stay at home to care for him? If you have not yet met with an elder law attorney to look at options for his care, you should do so now. Also, talk with the outreach person at your local Council on Aging who is knowledgeable about available services, including aides. Unless you take control of this situation, it is going to take control of you. I don't think you are going to be able to deal with this using small "fixes." You need a plan for the long term.
I have great sympathy for you. I also have my own small business and the only way I was able to keep working was to put my husband in day care 4 days per week and hire an aide one day a week. (And I don’t have any kids to take care of!) Even with that help, my business suffered greatly during the past 4 years. Now that my husband is in LTC, I am struggling to get it back on track.
Finally, it's normal to hope for an easy way out, so don't feel guilty about praying that your husband will die in his sleep. (Most of us have had thoughts like that.) Try to dump the guilt overboard. You don't have time for it and it will only sap your energy.
My main concern now is for you and your children. They do not have ALZ yet they are bearing the brunt. Have you discusssed with them what the future is going to be like? I know that you are venting and maybe just by saying it and discussing it you will be a peace with your solution. No one here is going to judge you for any decision that you make. My heart goes out to you. Please make a plan, and get yourself ready to follow thru with the plan. No one has used the word placement but I am going to put it out there. Do not wait to long. Here is a great big hug for you.
Do you have a counselor or social worker to talk to? The social worker can help you with options. An attorney might be able to give you financial options especially where the business is concerned either for in home help or when placement is needed. You are young mom with young children. You can't save your husband but you can save this disease from taking the rest of you.
As for him getting out - you need double keyed locks. It is no longer safe for him to go out alone. As said- put knives, matches, candles, etc under lock. If you have an electric stove I would flip the breaker when you are not using it. If it is gas - take the nobs off.
Don't forget to give the kids lots of hugs. This is something they should not have to go through at their ages.
Such great advice and support given here, Christine. My DH and I are much older, and I find it SO difficult, WITHOUT having to worry about how this would be affecting young children.
Have you thought about how your DH, in the early days of their marriage and parenthood, would have viewed such a scenario? Probably his decision would be 'the children need you now - I need you, but they need you more - they're so young - take care of their needs, emotional, financial, etc. first, then make sure you are strong enough, emotionally. I know you will not abandon me, but at this point, the children must come first, and to ensure that, you must come first. I love you".
Read all the excellent advice given above, and may God guide you.
Thank you everyone for your support and advice. I guess my head is still in the sand. I am not sure if it is denial or that it can't be as bad as it seems. I second guess my observations all the time. MYRTLE, your advice hit home....you are right..I can't let this disease take control of me and I have already allowed it to do so.
I do need a plan for the long term.
Marg78 you said it....such great advice and support given here....I need all of you. Thank you from the bottom of my heart.
Hi Christine, I don't think you're in denial -- you just don't know what to do. Many times, we recognize a problem but we're frozen in place because there are so many sub-issues, we don't know which one to address first. So we just react to each one as it comes along, without ever coming up with an overall plan. That's an acceptable approach for some difficulties but not for the enormous, demanding, and relentless challenge that is Alzheimer's.
I'm glad you were able to stop him from driving. If I remember correctly, your husband's neurologist was the one who was in denial about that issue. If that's the medical advice you are getting, no wonder you are second-guessing yourself!
Hi Christine, I have used the advice from this blog to great advantage. One thing that really helped me was the philosphy of "sooner rather than later". You might want to look it up here or someone can bring it up for you. Because we are in such unique situations with our spouses, we do no know where to look for advice and information. I am speaking personally. I have never met another spouse with a "youngish" spouse with EOAD. So, for the last 9 years, I have had to rely on a very limited amount of information. So, luckily, with the "sooner rather than later" philosophy, I have done things like hire a Geriatric Care Manager to inform me of medical, care, financial, legal options that are available locally. I hired an Elder Law Attorney in 2008 and have received immeasurable financial and legal advice. I know Elder Law sounds like it does not apply to you or your husband, nor does a geriatric care manager. You are both too young! But your husband has Alzheimer's and must make use of the services that are usually provided for older folks. I used adult daycare for a few years. My DH was youngest one there. He was safe, fed and entertained while there. Sooner rather than later! You must get him diagnosed properly "sooner rather than later". You must find some respite for you and your children "sooner rather than later". It was a relief when my youngest was in high school to have some time in our home without DH. Time for friends and relaxation. You deserve it, your children deserve it "sooner rather than later". You will find that there are networks locally that you can tap into. It won't be perfect but it will provide some help. Keep reading here! And happy 2015 to all. Even 2015 came "sooner rather than later".
What great advice!! You likely have helped more then Christine. I imagine there are others with the same difficulties and very young spouses with this terrible disease. Please keep posting. Great help