Visiting mom with Alzheimer’s dementia is now too stressfull, I don’t know how to handle the blaming and negativity and have tried everything. She is quite aware of her surroundings and continually complains to me during visits BUT acts wonderful with my siblings. She seems quite normal until she throws in a delusion or two. I know she has Alzheimer’s dementia but to me she is the same mom I have always known but now her behavior is exaggerated and delusions so real that her lies are believable.

When my adult children go to visit her she bad mouths myself and husband for putting her in memory unit. We did not, the AL said there was no choice and she had to go there due to her falls and delusions. To make matters worse, the memory unit does not want her to leave the premises for 6 weeks. As a result I am blamed for trapping her, not doing anything for her ...

Do I simply stay away or visit only every 3 weeks like my sibling does? I have tried to ignore it, change topics, agree with everything she says...

My heart races when I am with her and the constant negativity is taking a toll on me giving me asthma attacks.

I don’t feel like visiting her but yet I can’t abandon her.

I usually see her at least 2 times a week but then she asks me to do many errands for her adding extra visits.

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I am writing from the patients perspective. I was diagnosed a little over 2 yrs ago with Dementia/prob ALZ early onset a month before my 57th birthday. I began complaining about memory issues in the winter of 2011, it was June 2016 before I got a diagnosis after being fired from my job for failure to meet goals in early 2016.

I quickly began relaying to my DW and children, as to what my wishes were. I spoke with family on many subjects as we were doing our estate planning at the time of my diagnosis. The big topic for me was the healthcare planning for the future and when I need to be placed in Memcare. I told them, visit infrequently and that means not every week or even every month. My preference would be to make visits inconvenient by placing me in a facility 100 miles away from our home. I won't know whether you visited or not.

Yes, I know rare visits at unpredictable times are best. My mother was DON for a Catholic SNF when I was growing up. Show up at 3am some morning just to see what is going on, next visit be on a weekend mid day. Mix them up and don't call in advance. I do not want the world to revolve around me 24/7. I want my DW to go ahead and begin to make a new life for herself, now. She is in her early 50's, and in good health. I have an adult child in his late 30's, two in college and one going in to 6th grade. The youngest is just beginning life, the college kids are on their way to beginning their own adult careers.

I want my DW to get a start on planning for her life after I am no longer able to be an active participant in life, she has a lot to offer a future partner. I'd rather she spend time enjoying her future, rather than spending time on me who won't even remember she was there. I want my children to go forward with their own lives and live it to their fullest. These are the wishes I have expressed to my family. Perhaps some readers will see this and decide to begin this difficult discussion with their DH early, upon diagnosis so you get on the same page and do what is best for each other. My opinion, but, definitely one I've shared with all of my children old enough to understand, and of course my DW.
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Reply to jfbctc
Kickinrsd Aug 21, 2018
Jfbctc you are a truly rare individual! As an RN, someone who has been disabled with a pain disease for 20 years and someone who has cared for a loved one with dementia, it takes a special kind of person to be as openly giving and unselfish as you have been with your wife and children. In our society so many have taken on the pursuit of all things “self” as the utmost importance to the detriment and oftentimes the betrayal of all else and others.
I hope your loved ones understand and appreciate the rare gem in their midst. You appear to be a man of great integrity and honour to plan your future as you have. So many are tied to their family members in care homes by guilt often far more than love. You have made it so that is never an issue going forward. That is a priceless gift that will impact the rest of their lives as well as the lives of their children.
Than-q for sharing your story. My heart hurts for you and your loved ones with your being so young at diagnosis. It sounds like you have the strength and spirit to make the most of your life while you are able. I hope you have many more years of love and laughter with your family!
I wish you peace, love and healing light! XO
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I went through that with my mom. I had done it to her, not for her. She had so many delusions I lost count.

I’m sure your family knows what’s going on and they put no credence into what she’s saying. She probably not lying. She’s saying what she believes is true. Your family understands that her brain is broken and that she is angry.

Should you cut down your visits? Yes. They are stressing you out too much. She has other visitors. What errands does she send you on? If they are simply to purchase things for her, delivery can wait until you visit. You shouldn’t have to make a special trip. When she starts the blaming and negativity, no matter how often you decide to visit, make up a reason you need to leave and go. Self-preservation. I would not be in a hurry to take her out of the facility. She is not of the mind frame to go back willingly.

You must understand that she is angry and lashing out. You happen to be her unlucky target. You can’t fix it or her. You can stop trying to, though, before you make yourself really sick. If you need to find out how she is, call her nurse. That’s what I used to do, and they never minded.
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Reply to Ahmijoy
waterfalls Aug 20, 2018
Some of what your saying is true but she must also look into the medication dosages. Some have side effects that produce anger, agitation and confusion. In fact tommorrow morning I'm having a review of moms meds because she seems sluggish. They may have given her something to relax her. Its strange. Moms geriatric psych doctor feels the anger bouts are due to the environment.
No need to see her twice a week. Once is plenty, even every two weeks. Whatever feels good to you. It is causing you unnecessary stress. The facility would let you know if anything mom needs is urgent, right now. You are allowing yourself to be manipulated.

They want mom to stay in because she must be experiencing difficulties when you leave. This is a common request. My mom got too delusional and agitated after returning from trips out and they were stopped.

Discover Amazon. She may enjoy getting packages to unwrap with things she needs.
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Reply to gladimhere
Judy4224 Aug 22, 2018
I like your response about the number of visits. My mom went from “assisted living” which was more like independent living with medication dispensed. She was able to go because it was Medicaid approved. Was in the hospital for a UTI and had to have a pacemaker put in. When she got out assisted living could not take adequate care. In rehab and now in long term care in the same building. It has been a roller coaster of emotions and moods. She cried, ranted, tried to escape and all of a sudden she was looking for her baby. I never knew who I would see when I visited. I was going almost daily until I had to slow down. I was stressing and not sleeping well. The guilt was unbelievable. I stayed away for 2 days and when I went today she waved at bingo and was her old self. I decided I had to leave her alone and let her deal with it. I talked to her like I talked to my daughter when she entered first grade and would not ride the bus. I said you can cry and kick and yell about your situation or you can try to make it work. She understood me. She still knows when she acts up. I told her I would see her in 2 days when I left. She was fine with it. Hopefully, things will go smoother. She is 88 and in pretty good health. Another odd thing was her inability to talk without stumbling over words. That happened for a few years. That is totally gone!! Now she talks normally.
Too many visits are when you feel burned out, stressed out and guilty for going. We know it’s the disease talking, but we are human and can only let so much roll off of us especially when the verbal attacks become personal. I cut my visits down from every other day to twice a week. Sometimes the visits are awful and I leave. Sometimes the visits are enjoyable and I’ll stay a little longer. Sometimes visits start off great and go south so I’ve trained myself to leave when my heart rate starts to go up and make up a reason for my sudden departure. No matter how the visit goes, I end it with,” I’ll see you next time, and I love you.” That gives me peace just in case my parent dies before the next time. Even if my last visit was awful, at least my last words were,” I love you”.
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Reply to Alzh101

jfbctc, I do have a memory disorder due to brain damage from severe and chronic migraines and I have told both of my children if needed, to put me in a memory care facility and not to worry about visiting me. I feel the same way as you...I will not remember if they visited and I took care of my mom (with my dad) throughout her suffering of Alz.. I DO NOT want them to have to go through that! They are good people and I just don't want them to have to do that. Blessings to you, Lindaz.
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Reply to lindaz

Thank you all for your words of wisdom. Reading it made me emotional and I will adhere to some of the advice. She was only diagnosed a couple of months ago after attacking myself and elderly father and accusing AL staff of horrible things. They say she is in the later stages and has had this for years but due to my constant care with meds, groceries, errands she went undetected for years. She is definitely stubborn and likes to be in control thus the demand to go out and get things she doesn’t need like hangars , I get them anyway.

Her meds are great now but she still doesn’t understand why she is there, that’s the heartbreaker.

Anyways, I’ll definitely look for a support group as well but all of your responses have helped me a great deal. Thank you!
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Reply to LeeEps

Oh boy I can relate to this one. This is tough because you have some burnout but yet you see needs must be met, but then her illness is a problem is stressful to deal with. At least you only see her twice a week. I see mine daily. The reason is I have no one to help me. I see how she has been taken advantage of and I may have a law suit. It is hard because of her mouth sometimes. I make sure to pamper myself along the way. I watch the medication's carefully. My biggest challenge, staying organized with all the follow up. Alzheimer's is tough get involved with a support group. There are many. Find the right one. My mom asks me to run errands also & although it's tiring it keeps the life in her, plus its a familiar routine which makes her feel she's in control. I'm learning to cut back in small ways without her feeling I'm abandoning her.
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Reply to waterfalls

Are the errands she is having you go on things that she NEEDS or are they things she WANTS.
Just like when you were a child I bet she did not give into your every request.
When you go to visit early in the week bring a note pad and write down what she needs and what she wants. Tell her it might take a while to get all these things done but as soon as you have everything you will bring them.
When you return bring the items she needs and maybe some of the want items. And if she has new items to add to the list pull out the note pad and start the list that you will bring next time.
It is also possible that the reason she is asking you to run these errands is she knows that you will return. As much as she bad mouths she wants you back. By telling her that it will take a while to get everything on the list and bringing a "lot" of stuff back it will look like you have spent a few days gathering the items.
If there are things that she constantly asks for you might be able to stock pile them so you don't have to run out to get each thing you can "shop from home".
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Reply to Grandma1954

I am answering from a different perspective, that of a Jewish woman with a more traditional upbringing as regards family. I was able to keep my mother home until the very end, having at home hospice for the last year of her life. Besides that she is/was beloved, it is the duty of children to care for parents (although I can totally understand why an abused child would not do so). Just because a oerson has memory and cognitive issues does not mean that they are not still capable of fear and love, joy and loneliness.

If my mother had been violent I might have had to turn to a memory care nursing facility (assuming costs could have somehow been managed). I would still have gone every day to the place and even if I did not actually visit her, I'd be there to see how she was being treated. If you don't do that, the overworked, underpaid, and occasionally uncaring staff is going to let some things slide and perhaps even be less than careful with her care. This is true for even the very best of facilities.
Helpful Answer (1)
Reply to PCVS
MargaretMcKen Aug 22, 2018
Dear PCVS, I think that it is important to remember that it isn’t possible to know what we would do in circumstances that are different from our own. I visited my mother every day while she was in hospital. I also nursed her at home until her death from cancer, 24/7. However I know that I couldn’t have done it if it had gone on longer. Or if she had been a different person. Or if …. etc etc. Most of us on this site do the best we can, and too many of us have torn ourselves apart over very difficult decisions. Please don't suggest that someone will be ill treated if you make that decision.
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