How do you do this?
For those if you that are more successful at this than me, please fill me in on your secret. I feel like I’m suffocating. He follows me everywhere, keeps asking if I still love him, asks a thousand questions that don’t make sense. Argues with me about how to care for dogs, horses. I know it’s the disease but that doesn’t mean it’s not destroying me. We are never apart. If I call a friend he sits there listening in. The worst part is that when I lose my temper, it’s “shame on me”, because he’s blameless, of course it’s the Alzheimer’s. So not only do you sacrifice your life for this person, but you also have to deal with guilt and feeling bad about yourself for not being eternally patient. I’m always the bad guy. Tonight I lost it, told him I have to have some space. I doubt it made any impact. We’re trying to relocate near my mom and sister soon. I know I need a break. He won’t tolerate someone coming in to the house he doesn’t know real well to give me some time. About once a month a friend of his takes him to lunch but that’s all I get. Other than that it’s 24/7. Almost no contact with other people. Feels like I’m falling apart at times. Help!
Comments
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Kathy, I went through pretty much the same with my DH. I purchased a t-shirt that had "I love (or ❤️) you" in large print letters. I wore it whenever he's in that mood. I'd just point to my tee and have him read it outloud. After a few times, it seemed to sink in. As for you needing a break, and if he won't accept in-home care (the same as my DH), I tried an adult daycare program. At first, he resisted and said he didn't need it. But he went for a 2-1/2hr free trial and actually enjoyed it. There are places that offer respite care, too. You just never know if it'll work until you try. But it's so important to get some respite for yourself to recharge! This disease shouldn't be allowed to destroy two people.
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Kathy, I'm sorry it's so hard. Your emotions are those that are felt by a lot of caregivers. This disease really sucks.
You said "Argues with me about how to care for dogs, horses. I know it’s the disease but that doesn’t mean it’s not destroying me." Is there a way you could make him feel that you think he is probably right, and that you'll try to remember to do it his way? He doesn't have to know if you actually did it his way, and if he asks, of course you did it his way, and he was right. Of course you don't have to wait for him to ask. You take the lead, and tell him you tried it his way, and it was better. If you can do that, that should make things much easier. I'm not saying it's easy to do, but if you can do it, it's worth the effort. Just remember it takes two to argue. Small wins lead to big wins.
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I wish I had something more than support to offer. Yes, it is smothering, and yes, the isolation from others is devastating too. Sounds like adult day care might be the best thing in the short run. So hard when he's used to having his way/running the ship: my partner was the same way, absolutely would not let me make decisions on the farm and I felt completely hamstrung. So much deferred maintenance that i then had to deal with when she finally went to memory care. Have you thought about that, researched it at all? I guess if you're thinking about moving it depends on where you end up. I used to vent to this forum, she lost her computer skills (such as they were pretty early) and I didn't have to worry about her tracking my internet/computer activity.
I'm sorry you're in the throes of this.
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Thank you Dio, Ed, M1. All helpful points. I try to “agree” when I can but sometimes if it’s not good for the animals I have to be firm. He’s always been stubborn and that hasn’t changed. Yes I hope when we move I’ll be able to utilize adult day care. If he won’t agree to it, my mom and sister will be there to help. I find when I do get a break from him that I’m much more patient. I don’t want to have regrets when he’s gone, I want to be the best caretaker I can be for him. I know this isn’t the right place to be for either of us. Isolation is not healthy.
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Kathy,
Don't be afraid to trust yourself. Do what you feel you must do. You are in charge now. It's hard to accept, but it is the new reality.
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I know what you mean, and when you constantly have to let them think they're right and doing nothing wrong, it wears you down too. I can watch my DH chug down 2 cans of pop and if I say anything to him he'll just look at me and tell me he didn't do it. I too know it's just the disease, but when you're isolated and its just the two of you, it is definitely a struggle to have to go against absolutely everything you've always believed and done. Lately he has spent hours having long conversations with the pillows. He has more social interaction than I do, even if his are with imaginary people!
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Kathy, I didn't mean you should do it his way. Just letting him think he won the battle will be one less thing to upset you.
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Dear Kathy,
I know how you feel: isolated, guilt-ridden, angry, tired, lonely, frustrated etc. By the middle of the day, fatigue sets in and you can easily lose it. Even though we understand that they have brain damage and don't get it, it wears on you and you think it will never end. You are a human being in the most difficult situation of your life and you are NOT a bad person because you lose it. Dust yourself off and give yourself a break. Things that have worked for me: counseling (even if it is a televisit), walks or some sort of exercise, reading, naps (maybe he will retreat and let you rest by yourself), prayer, talking on the phone to friends, remembering this stage will end and he may become more docile. You do what you can but remember that you can't help the situation if you don't take care of yourself. I constantly ask myself about if what he is doing really matters, isn't hurting anything, then I leave it alone. I have learned to change my perspective from the panic of the here and now (thinking this will never end) to how the disease will progress and his behavior will change. I find I can have more compassion and patience (at least for awhile then as I tire, I can lose it). Kathy, please don't beat yourself up. No one can understand the situation until they have lived it.
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I posted about the exact same thing a few weeks ago. It feels like we are losing all of our identity and allowing ourselves to be swallowed up by our loved one's unending needs. I followed a lot of the advice I got here and things are going better. I try very hard not to take it personally, and I just nod and agree and then go do what needs to be done. When he is in that mood where he follows me around, talking incessantly about things that happened years ago, I just nod and agree. Most of the time that is enough for him. I do try to get him out of the house as much as possible, and the change in scene does help. I feel your pain! This is such a terrible disease and we just have to keep reminding ourselves that they can't help it. I hope your move will give you the break you need. Be kind to yourself if you lose patience - none of us will ever be able to say we handled things perfectly all the time!! Hugs!
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Kathy I could have written your post. I'm living the same life at times. My DH can act the same way. He was always a proud, born leader with amazing talents that people always gravitated to. In the early stages he would count on me to help him cover up his deficits. I would find myself laying out on the ground putting new twine on the baler or reminding him how to operate the tractor and I have never been the handy one. He took care of it all before. When I would hire help he would get so crazy that I started to let things go just to avoid the conflict and illusion that these people were ripping us off and still lurking around. Finally, I had to buck up and take a stand and get things done. I tried to contact people that he didn't know so he wasn't so embarrassed at not completing the work himself. I continue to assure him that he is retired from such. It's been a struggle even finding good help as we never needed it with all of his talents, so I wasn't sure where to start. There are days when I have visions of hauling him to a facility and dropping him off at the door so that I can have some time to myself but then he snaps out of it and is his sweet polite self again. Everyone says to ask for help but what can they do? His sis was here so I treated myself to an hour coffee with friends that I had not seen for months. As soon as i left he took off on her and hid in the barn. It's hard to imagine the in-home health care workers chasing him around the farm in my absence if I were to contact them. I try to make him feel important. He used to do the chores but couldn't remember what to do so I asked him to just give the barn cats a little food and later I found horse feed in their dish with some sad looking cats wondering how they were supposed to eat that. And yes it would be so much easier if they had some sort of acknowledgement of their limitations so that you could have an adult conversation about it and the future. And I don't know if it's some type of protective shell that it provides like shock that keeps them from knowing how bad they are and thinking that the rest of us are the crazy ones. If you can hang on, I'll try to do the same!!
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Oh, how i can relate. This stage we’re in is incredibly taxing..unrelenting,,and no light in sight. Frustration, guilt when we just.can’t.one.more.minute, depression. Sometimes it feels like my head will blow off at the absurdity :-( Yes, it is a disease and no one’s fault but Holy Heck it is a constant trial. I don’t know how we (you, me, and all of us here) will get through it, but we will. We have to. Hang in there.
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My life exactly!
The moment we show impatience then all h*ll breaks loose. Am I doing OK? No but that changes nothing. You said it perfectly, we are always the bad guy, it's never their fault, they do not understand what we are going through and they never do anything wrong. Always guilt for something, always.
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Kathy, I understand completely what you are saying. My husband is probably 5 years in and I guess still in the early stage but moving into middle stage. He obsesses about the news and weather, talking about them constantly and seems to bring them into nearly every conversation. And it’s the same things over and over! I get so frustrated but it is impossible to redirect him. I know he can’t help it, it’s the disease. He repeats stories over and over and talks nonstop. He is suspicious and paranoid and nothing I say can change his mind. And I can’t even get mad at him because it’s not his fault. I usually agree with whatever he says just to keep him happy but saying I agree to things I don’t is hard for me to handle. I do it because it’s easier than listening to him trying to tell me why I’m wrong and he won’t change his mind anyways. I feel worn down just like you. I lose my cool at times then feel badly after. I tune him out a lot for my own sanity. I do wonder how I will cope when he gets worse. I know I will stick it out until the end and do my very best because I love him. It's an awful disease. Please know you are not alone.
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OMG! You are so not alone. For a while, my DH refused all help. I finally told him straight out that he needed to accept care from someone other than me. Not sure if that ever even sunk in. He refused to go to adult day care even after we visited and he consented. The day of, he just stayed in bed and refused to go. He's forever asking me what he can do to help, and truthfully, the best answer may be just to leave me alone. Sigh. He also has angry outbursts, which worry me. I've been lucky because when my son took the car away, he really wanted to get out more, so he finally accepted a caregiver as a "driver". It's only 3 afternoons a week, but I am so grateful. He now wants to get the DMV to test him because he really thinks he can drive again. I just nod and say, sure, when you pass that test, I'll be fine with it. Sadly, his executive functioning seems to have left him, so I doubt he'll be able to set it up. Sorry to have rambled so much, but just encouraging you to continue as best you can.
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How do I do it ? Well first off I don't have a choice in the matter. So it is an adapt or die situation. I am not going to die over it so I have to adapt. Lately what is working for me is obsessing over golf drills and breathing exercises. I will do 3 minutes of swings followed by 30 deep breaths then blow out all my air and hold for a 30 count then inhale to full capacity and hold for a 30 count. I do those all day any time I can get away even for a minute I am out in the back yard swinging and breathing. It gives be an endorphin rush and just puts me in a peaceful blissful state. I will even be up at night without a club doing drills and breathing exercises. When my wife and I walk I am doing my breathing exercises I am obsessed with them. It puts me in a blissful state and I can do it anywhere anytime. When I am not doing drills and breathing, thinking about drills and breathing makes me happy and helps me endure any emotional challenges my wife's disease is putting me through. The point being find something you can conveniently obsess over that you love to do and keeps you in your own little world so you can retreat into that world when it gets heavy.
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Shadowing behavior is unnerving. On paper it seems like no big deal, but to have someone on your heels 24/7 is exhausting. Extend yourself some grace and make a plan to get some regular breaks.
The flip side of him being "blameless" because his brain is damaged is you making all the care decisions because he no longer can. My dad wouldn't tolerate caregivers in the home either. At least not until I brought them in under the guise of them being there to help mom who'd just had knee replacement. You can create your own fiblet-- you're helping someone out of work, she's a cleaner, a friend has come to visit, etc. He unpleasant as a baseline, but he did adjust and when we found the right person he actually enjoyed his time with her.
My mom became a much better caregiver with breaks which meant dad was able to remain in his own home until a few weeks before he passed.
HB
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Thanks to all of you for your encouragement, I’m so thankful for your responses! So helpful to know I’m not alone in my struggles. (Ed I completely agree with your point, yes when I can I do agree with him and let him think he’s right-) Thanks everyone for your support.
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I know exactly how you feel with his following you all the time and not giving you the "alone" time you need. My 62 year old husband was diagnosed with FTD in August 2021 after several months of testing (MRI, EEG, spinal tap) and the last few months have been quite the struggle. My "alone" time is when i wake up and have my coffee while he's still sleeping. It gives me about 2 hours to do whatever i need or want to do (at home). I can no longer leave him alone in the house, so he goes with me everywhere. And i enjoy EVERY minute of my alone time, even when i check on him several times before he finally wakes up. I used to get annoyed at him always following me and saying to me "I just want to be around you. I want us to be together". For me, I figured out that he wants to constantly be around me ( and sometimes right on my heels) because I am the one constant familiar/person in his life on a daily basis and he recognizes me! And I now embrace his wanting to be around me all the time because at some point he won't recognize me and might not want to be around me anymore. I know our experiences thru this journey are different AND the same, and that we are struggling and sad and angry and frustrated and confused but i just keep praying for me and my sweet dear husband and for all those suffering with the awful disease. May God bless you and yours
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Any posts about how your sexual relations change?
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Bubba, we've had a lot of posts on that. Try to do a search to see what you find.
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Hi Kathy
I was there living that life a few years ago. My DW is now in very advanced stages and has lived in memory care for four years after seven years home with me. As others have said, you need respite time. During her last few years at home I took my wife to a day program once a week and her sisters took her every Monday for the day. That time alone was very important to me. The other thing that kept me sane was simply learning as much as I could about the disease, so I would not be surprised when new behaviors appeared. Rather than reacting and taking things personally I had context and could be objective about what was happening. Unfortunately she developed rather extreme delusions and paranoia which led to her having to be placed. By that point and after her placement I was a basket case. I had to visit my doctor and temporarily get medication for stress and anxiety. Then I focused on learning about the psychology of caregiving and tried to understand what was happening inside my head ….grief, anxiety, guilt, loneliness etc, by learning about grief and loss, stress etc I was able to put my feelings in perspective and try to find some relief through walking, deep breathing, talking through ideas on a support group. The latter is probably the most important: I attend a monthly Alzheimer’s support group and talking about my issues with others who “get it” has been a huge part of my adjustment to a new chapter of life. My DW and I started dating at age 16, married at 21 and celebrated our 55th anniversary last year. I have a huge hole inside me since my life companion and marriage relationship is gone. Living alone is a challenge. But the support group has been a huge relief valve for me. Those of us who are further along the journey can offer useful advice to new members whose spouses are newly diagnosed. Also I visit my wife daily and have become a volunteer of sorts at her MC unit. She is no longer too responsive to visiting so I help the PSWS with small repairs, unpack supplies, build shelves etc. The PSW caregivers are like a family to me in that they know my DW now as well I do and that couple of hours each day of social contact has helped me adjust to my new circumstances.
Keep us informed of how you are doing. It helps just to put your feelings into words. We understand.
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Thank you Ernie for your insights and your kind words. I hope to be able to get some time away when we move-(near my mom and sister). The area also has more memory care resources. I’ll look into day care when we get there. Yes I need a break. Hoping my family can spend time with him so I can get time away. Wow this is a journey isn’t it? So challenging, so exhausting. We live on a beautiful 100 acre farm now, our dream home. But as beautiful as it is it doesn’t make up for the social isolation we both feel. The small farm we’re moving to is very simple, nothing like where we are now, but my priorities have changed. More than anything I need support. And he needs family too. Hoping things improve when we move.
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amen
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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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