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First of all I want to say how much I appreciate this site! If you have read my bio then you see what led up to me finding this site and all the helpful members. After a year of seeing signs of my husband's mild cognitive impairment (HYPER-sexual interest with a multitude of women online, memory loss and irritability) I am JUST STARTING to wrap my mind around having to interact with him differently. It's very, very hard. I watched a video wherein they said to "anticipate, tolerate and don't agitate" and I have failed at each and every one. He had a wellness exam last Wednesday and the day before I called the doctor's nurse to explain my suspicions but because of my husband's severe edema, he was placed in the hospital ASAP and the cognitive issue was not addressed. Perhaps it will be at his follow-up visit on the 17th. To date, though, the cognitive impairment has only been diagnosed by ME and not a doctor. All I know is this person I'm living with is not my husband and I can no longer respond to him as a wife....only a cook, maid, nurse, etc. I find myself being very resentful. I need to develop a thicker skin and stop personalizing things he does or sometimes says. Any suggestions and/or commiserations are welcome!

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I have been were you are. This is not an easy transition. I have been a part-time caregiver for my mother-in-law (only because she was in AL). I work full-time and would go by my mother-in-law every weekend. In the mean time my husband's dementia started to become more noticeable. So my caregiving was slowly starting to overlap. I had my husband tested the 1st time in 2012. In 2013 my mother-in-law passed away and my husband began to get worse. In 2015 he stopped working and finally had a confirmation. It was hard to take care of my husband knowing all our goals we wanted to accomplish. We always said we could be the couple that could have a 70th wedding anniversary. As he needed more help with daily activities: not driving, dressing showering, transition to activity center daily so I could still work, being to struggle with conversations, remembering events, names, family members. The list goes on and on. To servive caring for your husband you will have to start living in the immediate present that can change on a dime. I would suggest what ever stage he is in with his disease you try to live more and more in his world. This will not be easy friends/family relationships could deteriate but your caregiving for your husband and you will be much easier. Trying to meet everyone else's expectation will only add more stress for you. I lost my husband 12/26/21 after 38 years after marriage. I wish and pray for you to have strength during your journey.
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Reply to alzdone
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Hello and I am sorry that you are going through these changes with your husband. I am a full time caregiver to my husband of 33 years for the last four years. It is the hardest job I have ever had in my married life. You must take time for yourself so you do not loss yourself in this transition. You must understand that your relationship with him has changed a lot and you are now his everything. He will need you to cook for him and make sure that all his needs are met because he cannot do them for himself anymore. My husband has a left leg prosthetic and it has changed his life completely as well as mine. I just want you to know that having these feelings is normal and that you should reach out to other family members if possible to help you. I wish you the best and I hope you reach out for help if you need it!
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Reply to lewstillcoping
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I empathize with you. I separated from my husband for his abuse then took him back only for the abuse to be even worse than before. He is on an antidepressant now. His doctor talked to him and the abuse has stopped. He has Alzheimer’s. Can still take care of his own personal care but that’s about it. He absolutely is driving me insane. He has nothing but TV. Otherwise he just pays attention to my every move. Follows me from room to room. Offers to help ( which sounds lovely). But does it every time I try to do anything. When I let him help he just screws it up and makes it worse. I’m sitting in my car in a parking lot cause I couldn’t take it any more. I’m not in love with him. I think all the years of abuse did that. I’m thinking that this is my life for the next few years it’s only gonna get worse and I just want to go join my family at this point. I’m not suicidal but. Don’t how I can go on. I’ve tried to get him involved in hobbies but he’s not interested and he’s not the type that would go to any day care. He knows what’s going on still. My son won’t help. I’m responding to someone else’s problem and I’m embarrassed that I’m not being helpful. Desperately looking for help
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Reply to Pamela8
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DoWright May 13, 2021
Your situation is exactly what i am a caregiver for; i enjoy helping smooth out the rough patches of change. Yet so much of where i am needed is housecleaning, & computer assistance. The lady of the home took in a problematic husband she had divorced from a long time ago. I am proud of her for trying but her own health is more concerning than his daily needs. They are finally getting their own places & moving on from sharing. The in home support I provide helps them both & is a good place to look into for you too. Takes time to hire who you want & still worth a try; instead of just expecting other family members to get involved. Allow PT *physical therapists near to elders who are cognitive & physically impared really helps. Just start with the PCP by being honest. Mental health support is available for you. Eventually therapy will reach for him to get involved as well even if voluntary. Just know this is a typical scenario of sharing a place. Sometimes it is best to seperate the 2 adults.
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In my husband's case he was misdiagnosed as having "behavior health" issues until I took him to a Neurologist who ordered a PET scan, This showed that areas in the frontotemporal area of his brain were not functioning properly, He was diagnosed with Frontotemporal Degenerative Dementia (FTD). It sounds like he may have the behavioral variant of this. My husband has severe delusions. The only thing that helps are antipsychotic meds and antidepressants. Hope this helps.
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Reply to paintertr
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Imho, I'll pray that your DH gets a dx on the 17th if May.
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Reply to Llamalover47
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I can fully understand your feelings and agree with them. Right off the bat, I can tell you this. It is dementia and illness and it is going to get worse and worse. Think now if you can and will handle this. Not everyone is suited to be a caretaker or they have their own problems and responsibilities. Think ahead and plan out of the box. Now here is the clincher - I don't care who or why, if you find that person is damaging you and slowly making your life hell and you are going downhill, stop at once and do something. That might mean a caretaker or placement in a facility. The goal is to start thinking and planning and doing lots of research now so you are ready when the "s*** hits the fan". You do not deserve what is coming.
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Reply to Riley2166
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I have had the same issues with my husband. After putting him into a board and care home the situation is better, however heartbreaking. He cries to come home and begs me constantly. As a pro football player, he is much too heavy for me to handle. It is just heartbreaking. I don't know how long I can afford the fee which is almost $5000. but I am hanging in there.
Look into getting help as you are surely going to need it. Good luck!
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Reply to juliea4cm
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I can relate to this. Over the past several years, without hardly realizing it, I had become a caregiver and not married anymore, but at home with a patient. I knew something was really wrong, but he refused to go to any doctor and so I was diagnosing him or getting advice from others. Now we have a neurological and psychiatric diagnosis -- somewhat, but it's all guesswork. As are the meds. My husband doesn't suffer in terms of memory or everyday cognition, but he's been diagnosed with Parkinson's dementia, which added to a lifelong history of bouts of depression and anxiety, has now morphed into entrenched and debilitating delusions, paranoia, and intractable depression. We're both in our 60s and I made the decision that my caregiving takes the form of doing everything I can for him while not sacrificing my well-earned right to living a mentally healthy life. I worked hard for the happiness, friends, and security that I've achieved now, at 63, and I won't give it up. For me, that means not living with him. For now, he's a few miles away in independent living complex with full meals, with aid visits daily, plus a psychiatric nurse twice a week. We're not rich by any stretch, but for the meantime this is working (and cheaper than assisted living). I spend time with him every other day, watching TV, bringing him a homecooked meal, reading the news. He's terribly unhappy -- but he was miserable at home, and now, at least, I can carve out my own wellness. I battle with guilt, but I have a therapist for that. On her advice, I've joined a NAMI support group.
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Reply to mabelle2
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Have toy checked with his insurance company to see if they will pay for in-home health care and/or aides.


I get 10 hours of aides a day. This helps but I have to stay close by as her bipolar disorder makes keeping aides difficult. Also, with a narcissistic personality, she doesn't think anything anyone does is ever right or good enough for her. Also very few aides are trained well enough to do a thorough job.


She was diagnosed wit Advanced Vascular Dementia this past fall. Her days vary as to who she is and what she remembers.
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Reply to garylee
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I’m so sorry. I’m seeing this more and more. We are living longer but often not in a way that’s fair to us or loved ones.
long term care is expensive and not planned for early enough. Often times the wives take it on themselves as they tend to outlive men.

Please find a support group to attend. Perhaps virtually or find an in network therapist.
You must take care of yourself. You need help in seeing an honest picture of what’s coming and what choices you have. Choices mean change and change is something we humans avoid because of the unknown.
There’s no easy answer but having knowledgeable professionals that deal with memory care(dementia) is a place to start.
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Reply to Radaccept4me
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Can you share the name of the video?
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Reply to LexiPexi
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One thing that I have learned from my very long caregiving experience with my mom in our home, is that my husband and I already discussed that neither of us wish to burden the other with long extensive caregiving duties.

You have a lot on your plate. Certainly, it is your choice to make if you do wish to be the primary caregiver, but don’t hesitate to ask for help when needed.

Also, don’t feel badly if you find that you are not able to continue being his primary caregiver. Placement in a facility is a necessary in certain circumstances. We can then become a strong advocate, overseeing their care without the anxiety of the day to day burden.
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Reply to NeedHelpWithMom
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You story sounds identical to mine. I am 5 years into the first time I realized he wanted me to drive all the time because he couldn't remember how to get anywhere anymore, not even a mile up the road to his best friends house. He went through the sexual interest in women from his past and trying to meet new ones on line. He even went as far as calling and writing letters to old girlfriends, which, as you can imagine, really pissed me off. He could write the letters but couldn't remember how to mail them. When I found the letters he told me it wasn't him that wrote them. That's when the light bulb went on that his memory was much worse than I thought. Another year goes by and I asked him who he thought I was and he kind of laughed and said you are my sister why would you ask me that? So that's when I went on line found Teepa Snow and Dr. Natalie Careblazers (excellent youtube videos). This one helped me more than any other site. I told his GP doctor about all this and he gave a simple test to him. He asked him to draw the face of a clock, I was shocked at the results. It looked like a Dali painting and my husband was an artist and graphic designer. Definately go to youtube Careblazers and join up. It will help immensely. Sorry for your loss of your best friend.
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Reply to NOLAsaints
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I am in the same place. I had to move to an Independent Living facility to have only two rooms and a bathroom for him to rearrange/mess up all day long. You can escape to the lobby, common areas when things get bad. After 4 months we are looking at memory care or assisted living. There is all this advice they say is available but you do not have a minute to spare to read it. There are others like me in your situation and I understand your pain.
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Reply to Hikercarla
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Commiserations! I'm in exactly the same position. YOU NEED HELP! I also have no actual diagnosis, but it's so clear it's dementia and there's nothing to do about it.
I now have an aide who deals with my husband's many physical issues, and even though I still resent being cook, maid, nurse instead of wife--and accountant, supply provider, doctor and medicine coordinator, family communicator, etc.--I can (well, I have to) handle it.
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Reply to helpme99
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All the advice here is wonderful. I too “lost” my husband to dementia. It made me realize how much I have depended on him all these years to do the taxes, pay the bills, do work around the home that requires his strength. It is not just the exhaustion of caretaking but the loss of my best friend, the one I would consult with my own worries who has known me all these years. While social workers and friends can help it is not the same and it is lonely. We are widows with a job we didn’t apply for-caregiving. When when first enrolled in a clinical trial and I was referred to as the “caregiver” I said to myself “That’s some sick joke. He is my caregiver.” This is all very sad and we are chronically mourning and since he is still present, we are often angry. The people who understand are here on this site.
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LexiPexi May 11, 2021
Beautifully written and oh so true. Thank you.
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Since you realize that your husband's personality has changed, consider that you are married to a different person. Here are a few suggestions:

1 - Accept that this "person" is who he is. You will feel loss, loss of the person your husband used to be. It is OK and normal to feel this way. Stages of loss are 1 - denial (that there is a loss), 2 - anger (probably what you are feeling now), 3 - bargaining (usually seen in ineffective methods to get the past back), 4 - depression (the sadness when you realize that this is permanent), and 5 - acceptance. You can get to acceptance, but realize this is a process.

2 - Your husband needs evaluations. Before your husband is discharged, make sure a doctor evaluates your husband. Don't be surprised if a neurologist an/or geriatric psychiatrist are consulted. You might want to demand a neurologist since strokes can cause the types of behavior changes your husband exhibits. With some types of dementia, medication can help "get back" more of the husband your remember, but medication will not be a permanent cure since they do get to a point of not working. Make sure your husband's doctors explain the usual course your husband's dementia will take so you can be prepared for his life changes.

3 - You need help. Caregiving is probably the most difficult job in the world. Before your husband comes home, enlist the help of family, friends, members of faith community, and paid help to lighten your caregiving load. You need enough people to give you time to meet your own needs: 7-9 hours of sleep every night, 3 daily meals at reasonable pace, time off to see your doctors, and time off to refresh your soul (time with friends and activities where you also do not have to care give).
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Reply to Taarna
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What I do is make sure I have quiet time to build myself up. For me that’s daily devotional and time meditating. You do whatever feeds your soul. I have learned to forgive myself for all the neg emotions toward him and realized I need a huge support system of family and friends. It has taken a while-been doing this for 5 years. My husband has had strokes plus emotional/health issues that have caused him to behave differently. I ignore the internet interactions, his negativity, and sometimes just have to walk away for a little bit. I hope this helps
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Reply to jpweller88
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Your feelings are natural and expected. You have had a great loss and a vastly increased amount of emotional and physical work. Take care of yourself, get any help you can afford for both your sakes. Lots of suggestions on this site. Bless you both.
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Reply to Moxies
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Adress it with a Dr in case it's just a medical embalmed that can be raters.

Talk to husband about it.

Prayers.
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Reply to bevthegreat
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This really hits home, I had to put my 68 year old husband in a memory care facility because after a few years of just me taking care of him, it was, and still is, taking a toll on me, physically and emotionally. His physical health is basically good, but the mood swings and behavior from Alzheimers got to be overwhelming. I tried for two years to get in home health care, but in our community, there was a lack of experienced and caring employees from 3 different agencies. Plus, they were unreliable, being "a no show". Covid didn't help matters either. My husband was getting more and more agitated with not being able to drive to see his friends, and didn't understand why friends couldn't visit us. The confinement got to his moods, and he even hit me hard, plus threatened me several times. It's been 8 months since he's been in a memory care facility, and the first place where he was made me transfer him to another since his behavior with women got to be too much. With the transfer and additional meds, he's doing better. But he doesn't understand why I can't visit him all the time, and calls me several times, but he can't hold a normal conversation due to limited speech and he can't verbalize what he wants to tell me. Thus, my stress level goes up, and my health is getting worse. We have no family nearby to help out, and only a handful of friends that have stayed in touch with phone calls or visits. I'm not too pleased with some of the neglect that happens in the facility, as far as them losing or misplacing some of his clothes, plus allowing other residents going in each other's rooms and taking things. For the money I pay each month to have additional staff take care of him, they're sometimes not meeting my requirements. Anyway, I suggest you place your love one in a facility before it gets to be physical and you getting hurt. Best of luck to you.
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Dora1030 May 11, 2021
God bless you and good luck! It is good that you were able to put him in a me ory care unit.
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Get connected with a social worker and groups in your area who can advise you on your options. You're going to need advice and help along this journey. This is not just about him, it's also about you and your capabilities and needs. Be sure that all of the paperwork is in order for you to take over as POA. You both should have living wills with your medical directives, a will, POA for medical and financial matters and check with your bank and financial institutions - they often have their own POA forms. Also be sure that you are on file with Medicare and Social Security to be able to speak on his behalf. You have 2 basic options when you need help. You can have aides come to your home to help, and at some point he may have to move to assisted living. Have aides come in to allow you some time for yourself. You may want to take over the financial affairs if his judgement seems to be impaired and he is contacting people over the internet. There are a lot of scammers out there looking for people to prey on, and seniors are prime targets. Put a low limit on his credit card. Lock up your valuables and personal papers if you will have "strangers" coming into your home. Of course, all of this will be easier if he cooperates. All the best to you, and your husband.
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Reply to NancyIS
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Lexi...I just read your subsequent post. I actually do think if the roles were reversed my husband would take care of me BUT we have that age difference so it would be difficult for him, especially with his mobility problems. He would probably end up putting me in some sort of care. Interesting question.
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Reply to PrairiePrincess
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Thank you for your honest post. I'm a spouse to my husband with Parkinson's disease, associated dementia (not lewy body) and is clinically blind as he can no longer keep his eyes open. The newest issues is not being able to chew and swallow (is it the Parkinson's or dementia) - who knows - seems to be same results with no good answer. Meal time is about two hours - so that takes up six hours a day with little food intake. I, like you, feel like a domestic - with the caretaker, nurse, etc. added to the mix. I will admit, I've become resentful (mostly from lack of sleep). I'm looking forward to reading some good answers - as I don't seem to have many any more.
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Reply to LexiPexi
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Unfortunately he was only in the hospital for overnight observation; the doctor said he might be there two nights but that didn't happen. Obviously I wish it had!

He's not a Veteran and we do not have Long Term Care Insurance. He has four children and the only one who is NOT estranged lives in California. I now have a LPN coming to do his foot care every other month which I may increase to every month. I was hoping that would be a segue into occasional "visiting angels." We have financial means for that but probably not for long term memory care. And my husband is sharp enough to be concerned about what I will have left to live on so he's very careful about expenditures (except, of course for that $720!). Plus he is very reticent about having ANYONE but me tending to him.

It's my belief that he has the dementia that only affects the one part of the brain, although I've seen a sharp decline in memory loss and confusion in just the last few weeks. Hopefully this will be addressed at his follow up visit.

I tend to live in denial and procrastinate so I appreciate both of your comments. I'll try to be more proactive and stop living one day at a time LOL. Thanks!
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LexiPexi May 9, 2021
Me again. After all these years, I'm finally getting past - that he only wants ME to take care of him and not feel guilty. People keep telling me - that other people can physically take care of him (at least part of the time) and I can still over see his care - so I am still taking care of him - just not all of the day to day. If it were reversed I know my husband wouldn't do for me - what I've done for him. He may pay for it, but he personally wouldn't do it himself or put his life on hold for me. What about your husband?
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If he is currently in the hospital see if he can be evaluated while there.
You should also talk to the hospital Social Worker.
Is your husband a Veteran? If so it is possible that the VA can provide some assistance.
One of the things that you might want to do while he is in the hospital is to talk to an Elder Care Attorney.
One of the other things you need to line up and have in place for when he comes home is caregiver help. You can introduce them slowly, more like help for you..not for him. After he is comfortable, make a run to the store while the caregiver stays with him. He will get used to it, it may take a bit of time.
At some point you need to decide if you are going to be able to safely care for him at home or will Memory Care be a safer option. And I mean safe for you as well as him. (Again if he is a Veteran you may have the ability for more help or even be paid yourself for the care you give him. Rules have changed about paying spouses)
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Reply to Grandma1954
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After reading your bio, I think you need to hire in home caregivers to help with your husband so you can take a break every day. Burn out is real and can lead to elder abuse very quickly if a plan isn't put in place to address your needs as well as his. Both of you are affected by his dementia, especially as it begins to worsen.

It's a good idea to get DH to the doctor or neurologist for a full workup so meds can be prescribed if he gets aggressive and so you can call on the doctor as needed. That's important to get a diagnosis and support, not just from the doctor but from friends, family and even an in person local group, perhaps. It's A LOT for you to deal with alone, and you shouldn't have to.

Go to alz.org and read up on what to expect. Read The 36 Hour Day and search for other books on Amazon so you can learn all about dementia. Teepa Snow has some great videos on YouTube as well.

If you have financial resources, look into Memory Care Assisted Living for DH when things get too difficult to manage at home.

My mother has moderately advanced dementia and lives in a Memory Care Assisted Living place herself. There is no way I would be able to manage the level of care she requires at home, that's for sure. I thank God every day for the great care she gets 24/7 over there, too.

Wishing you the best of luck with a difficult situation
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