Frustrated and overwhelmed
I am in NH and can’t seem to find a local support group that I can attend in person. I do think if I found one I would fall a part emotionally. I have kept it in for so long.
Currently for the most part he can do his own personal care, make light meals and hep with chores (with guidance)
I find him removing food from the trash, never in my wildest dreams did I have to think about what was in my fridge! My son was visiting a few weeks ago and my son came outside to sit with me and I noticed he was eating BBQ chicken. I asked where he bought it. And he said it was in the fridge. I panicked and said don’t eat that, and went and looked in the fridge and there was a zip lock full of chicken I had thrown out days before. When I threw it out it wasn’t in a zip lock bag, I had just thrown it out loosely.
Then 3 days ago I found a can of crab meat I had thrown out hours before in my fridge, I had neglected refrigerate it when I bought and the can puffed out and the seam had broke so due to my neglect the meat had gone bad. When I asked my husband why it was in the fridge he replied he was going to eat it. He had gone though the trash, that can was on the bottom of a half full trash can.
Why would he be looking through the trash? This is just a snippet of things going on here but there is no one share with that I feel comfortable talking to. I don’t want family members judging myself or my husband. I should mention we are newlyweds although we have been together 14 years.
Even when I finally decided to marry him I had reservations as I felt I was taking advantage of him but I talked with his psychiatrist and his psychiatrist assured me that my husband was still capable of making life choices. I am still not sure I made the right decision.
I feel like I could just go on and on, but it would make this post too long so I will just start with this post.
Thanks for reading
Comments
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You definitely need support! My heart breaks for you and your family. Glad you found this space to vent. Hope it helps. I am new here and can offer that my 89 yo Dad had Alzheimer’s and we cared for him as a team. I can’t imagine what it must be like doing it alone. Your feelings are so valid. Perhaps his doctors or insurance company can provide some resources.1
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You are in a safe place to open up, share your concerns, your fears and your experiences. Too often those who are not living in this nightmare cannot fully understand the experiences we face often. Use this place to get your feelings out and share the experiences you are having. No one here will judge you or criticize you. e are there with you or have been there also. This disease has no boundaries as to how it will affect each person. It will cause brilliant people to do do seemingly "insane" acts. You will find that you must be "on watch" every minute and it is exhausting. Don't hesitate to bring in help, if even for a few hours, to allow you to recharge for the next shift. There will be no logic to much of what the loved one will do. Their brain is mixed up, some more severely than others, and common sense, old habits, logical thinking has been lost. I encourage you to find anyone in the family who seems supportive and get them signed up on this site. They need to read what gets posted here from real people living in this very unreal nightmare. Every person you can convince to join here can become a resource for you but, in the meantime, join us here and open up as often and as freely as you wish. We will not judge nor criticize, only support, offer suggestions based on real experience. This is a safe place.
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So many of us have experienced bizarre behaviors with our loved ones. Your new friends on this website will offer so much understanding and compassion, which is so desperately needed during this time.
Call the Alzheimer’s hotline for help too. The number is 800-272-3900. They have care managers who are trained social workers/therapists. They will guide you through this. They can also provide you information about an online support group which you can attend via zoom or just call in on your phone. For more than a year i was unable to attend an in person support group and i found the online group so helpful i now attend 2 online groups and 1 in person. Help is here and through the Alzheimers association. You are not alone in this.
Read a few books too - best is They 36 Hour Day by Nancy Mace and Peter Rabins.
Also check out youtube for free videos with Natali Edmonds, Tam Cummings and Teepa Snow.
special hugs and blessings to you. you will get through this and learn a lot to help both of you.4 -
You need to dementia-proof your household. This means to make the home safe for a PWD (person with dementia). Everything dangerous needs to be locked up. PWD have been known to drink bleach or other cleaning solution thinking it was a beverage.
You didn't mention but does he actually have a diagnosis of dementia from a neurologist? If not, he needs a thorough medical evaluation to search for medical causes of diminished cognition and poor judgement. These are often the first signs of dementia, even before significant memory loss becomes apparent. Otherwise, continue as recommended above.
Also look into consulting an elder attorney for the legal steps that need to be taken.
Iris
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I felt the need to protect my children’s image of their father and didn’t want to tell them all the crazy stuff he did. Don’t! They can’t help if they don’t know what’s going on. My family stepped up and hopefully yours will too.
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yes, he (age 73) was diagnosed about four years ago
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I just can’t bring myself to tell my boys. This my second marriage (all of 11 months) and where my son’s don’t know him on a deeper level, I am concerned about how they will view him. It would hurt me deeply if they rejected him.
when I met him 14 years ago, he brought me out of a dark place, I had been in a 38 year abusive relationship, and this man was so patient and gentle with me.4 -
my husband was obsessed with garbage for years even prior to diagnosis. He would take everything out of the trash and cut it in little pieces and take it out several times of the day and even in the middle of the night. I would create 2 trash cans. One with just paper etc and put all the garbage out instead of in the house if you can. It’s compulsive and due to anxiety so he can’t stop doing it. As I learned here you can’t reason with someone whose reasoner is broken. Learn everything you can about the disease and caregiving. Start with the book “The 36 Hour Day” mentioned in an earlier post.
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Welcome, you are getting good advice, and you really can say anything here.
Either throwing things away that they should not or going thru trash and being angry that you threw away something completely worthless, neither one is uncommon. Sigh. As for food, persons with dementia can lose both some of the ability to smell, and also the ability to connect smell to danger and socially unacceptable odors. (Like spoiled food, urine, feces, smoke) Also they can lose the ability to look at food and connect that mold or slime is dangerous. My LO also did the looking in trash, I literally had to hide old food in the lower back of the fridge until trash day, then sneak it out to the garage and hide it until I actually could push the trash can to the curb, which was too far away for them to walk. As much hassle as that was, it was better than getting in an argument every time I took trash out. Doing things like this is called a workaround.
There is often a mention on these boards of a Plan B, which is how your LO would be cared for (short or long term) if you could not provide care. Think about who in his family (or yours) would be most likely to handle that. It would be a true kindness to that person if you let them know some of what is going on, so that they would not be completely unprepared.
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I mimic the advice given here and practical approach to a workaround. I have several incidents of my DW being angry about what might or might not be in the trash. I literally hid secret trash under the kitchen sink and would take it out nightly after she fell asleep. In my case she is not out looking in the outside cans so I could get away with it. This behavior lasted for nearly 2 years before it began to pass. And now I have to pay attention that she isn't putting the wrong things into the trash…🤔 Many late nights out by the trash can with gloves on going through trash - I only had to lose two sets of car keys to learn that one.
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this. Is so helpful! Thanks for responding
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I bought many child proofing devices. I put them on the refrigerator , cabinet where trash was, door to basement etc. I put covers over handles to out side doors.
My husband was obsessed with turning on the water for shower and sink .. Everynight I had to turn off the main water source in basement so he wouldn’t flood the bathroom if I fell asleep.
Im sorry you are going through this. It is exhausting.1 -
First, here is a link to the NH/Mass group. Call them
Secondly, lose the shame! As my DH said before he totally lost his mind, “Tell everyone! There is nothing to be embarrassed bout having a brain disease.” Alzheimer’s should never be a source shame.
Third, Find a group and let loose. In my group I have cried, ranted and been open about resentments and fears. They have always he.ped me.
We are here for you.2 -
"Don't hesitate to bring in help, if even for a few hours, to allow you to recharge for the next shift."
This is so important. After three years, I am finally looking at day programs and plan on interviewing some one to help at home…and I realize that it's not just so that I can have time for myself but also so that I can recharge and be a good caregiver, not just MUSCLE THROUGH!
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Perhaps his trash rummaging has something to do with his childhood? Did he grow up very poor, or in a home where food was severely rationed? Or has he been on strict diets during which hunger drove him to desperate measures? I live in Montreal, and I attend a support group once every two weeks. However, that seems woefully inadequate considering that every day presents so much drama. I too feel isolated and often desperate.
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I find it quite remarkable that even though we often feel that we can't go on, we do. And on and on and on
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For me, that is one of the main reasons I advocate others to participate here. Caregivers on here stay with it, regardless of at home care or in a facility. I have yet to see anyone just give up, as much as we may want to many times. It added credibility to the input here for me which made it an invaluable resource, albeit recognized , or unaware by so many in our shoes.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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