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Everyday is like a roller coaster for me. I have been with my Mom (who has moderate dementia, possibly severe for 24/7 almost four weeks now since her husband of 34 years passed away) We have only been home for a week, but I've spent most of the time filled with anxiety. Some days I can barely eat, I know I'm losing weight, and the slightest thing sets me on edge. This is NOT like me at all. Of course, I'm brand new to caregiving in the same state much less the same house. I've been asking lots of questions on this forum, and I have plans to join an "in person" support group too. As soon as I can get a spare moment away from my mother...so far it's only when I sleep, shower, or potty. The caregivers are scheduled twice a week for four hours, but that hasn't really started yet, plus Mom is reluctant and in denial. Yesterday was actually a good day, but that's because both my daughter and I "hung" out with Mom almost all day....we went to the movies, went for a walk, got yogurt, etc. I realize that being with my Mom calms her down, but at what point do I get a little piece of my life back? At what point do I stop waking up each morning with anxiety of what the day is bringing? I have a doctors appointment on Tuesday because I think some anxiety Meds would help me through this transition.....I thought bringing her here would make her content, because that's all she used to talk about, but the disease has progressed to the point that it is not necessarily the case. Also, im pretty sure that I'm just being impatient....everyone keeps telling me I am strong, I am one of the strongest people they know, but I don't feel that way now. What inner dialogue can I start having with myself so that I'm not a complete wreck? I am a strong person, why is this so hard for me?

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Took mom to doctor who added another anti anxiety med and another memory medicine to her combo. She had another good day yesterday, but I still keep waking up with major panic each morning. I'm really conflicted about all of this.
My plan is to take her out of state at the end of June to bury stepdad, and when we get back, have someone else take her from the airport straight to the memory care facility that's only five minutes from my house. (She will already be disoriented) I was going to make up some lie about needing to go out of town with hubby for business and that the doctor thinks it's best for her to stay at this memory care place where they can do some therapy.
When mom has good days, I think I can keep her at home, but most of the time I'm just a mess, and honestly I don't want to give up my life right now. Not to mention I've got practically no time with my husband since Mom doesn't go down to her room until between 9-10pm every night after we watch tv together for a while.
I guess this plan gives me time to evaluate things further while I set up the other plan, and I suppose if I change my mind at the end of the month, then I'm only out some of her money.
She has said repeatedly that she doesn't want to go to another AL facility, but she also has no concept of time or her lack of life skills. She doesn't realize that her living with me is 24/7 caregiving.
Things have gone well with the caregiver who comes twice a week, and I've already asked if she is available more often. I suppose I could ask for another caregiver too. If it were to ever work at home I would have to have help more than twice a week....
Any input???? Advice and suggestions welcome....
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I agree Blackhole, I am barely here for myself, much less hubby or kids. I've lost 10 lbs in a month and wake up panicking each morning. Even with another adult helping, I'm a nervous wreck each day until I run out of adrenaline. Today stepmom said she was kind of on board with the memory care after spending three days here...she says she is worried about my guilt, but I figure guilt might be easier for me to deal with....don't know.
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Yes, make the time bury stepdad soon. With the theme/location/etc that's expected and intended. This is important to your mother. Even if she's expressing herself poorly.

As for stepmom nudging you to keep mom at home, don't fall for it. That generation considers it a badge of honor to dig in at home or reign as the honored guest at an adult child's home -- consequences be dammed. With the twin #1 consequences being their safety and their adult children's sanity.

Our elders are pathologically resistant to what's good for them. And what's healthy for the family as a whole. Even on mom's good days, she'll never acknowledge (in any meaningful way) that your sanity is a priority. She can't and she won't.

You are doing a great job with your mercurial, grieving mother whose brain is short-circuiting. And the sad reality is that her good days are flukes. And her bad days will soon be the new norm. I'm not being a Debbie Downer. It's just the progressive nature of dementia.

This is surely rough on your husband and teens. Even if they are being good sports about it. Don't lose sight of how important it is to respect and honor your pre-existing household. Right now, it's impossible for you to be present for them.

Make choices that will restore your engagement with your husband and kids. It won't "just happen."
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Sunnygirl, today was a good day again, I got away for five hours to run errands by myself! I toured a memory care facility, had a doctors appointment etc. My stepmom has come to town for several days to help out, and today we also had a caregiver tag along with them. They hung out while I "got away." I noticed that my stepmom virtually engaged and entertained my mom all day--which of course I don't have the energy to do....I do a little bit, but not to that extent.
Tomorrow I tour another facility.
My stepmom thinks I can make this work...I'm still unsure. Two nights ago I was DONE, but after two decent days I can see the possibilities. I'm going to continue to line up plan B, While I continue to muddle through Plan A.
Only down note today was Mom got angry tonight when I went to "tuck" her in. She's upset that We haven't buried my StepDad yet, who wants to be buried in a tiny town out of state. I had hoped to do it over Thanksgiving, but my stepmom suggested we go take care of it sooner, maybe my Mom needs that closure.
I don't know. I wonder if it will make a difference, or she will just get angry about something else.
Now I'm just rambling...

And yes, Mom vaguely recalls the phone calls with the therapist. She completely forgot the first "ugly" call, but somewhat recalled the hour long FaceTime session.
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I'm glad you had a nice day with mom. That's how it often works. With my cousin, there would be sometimes that she would be almost like her old self, but then......she would not be able to function.

Does your mom remember her calls with the therapist?

I would continue to have something lined up. Regardless of how she progresses, there will eventually be a need for help.
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Ok get this..today Mom was a complete pleasure!
I'm so confused.
She got irritated this morning, so I suggested she call her therapist, she was mean to her therapist, and then the rest of the day (so far) she's been appreciative and agreeable.
If she could be this way most days and accept some time with caregivers, I could do this....
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JJGood, yes, get Mom checked for a UTI. It's good you are seeing that this arrangement isn't working out for the best interest for either of you.

That "not everyone is cut out to be a caregiver" article was a Godsend for me. I never had siblings, nor had children, thus I never learned to reason with an 8 year old, thus couldn't use that experience on an 98 year old. I would be a bundle of nerves, too. Some people can take that type of stuff in stride, even laugh to themselves at seeing an elder have a 2 year old temper tantrum.

Don't forget your Mom is still grieving that her husband has passed a month ago, that is going to take time for her to adjust. The tantrums could be she is mad at him... this isn't how their retirement years was suppose to be. Is it fair to you, of course not. Any type of life change will kick start the next stage of dementia.

Keep us up-to-date.
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fredflyer, thanks for that article....it makes sense. Mom was very angry most of the day yesterday. At the end of the day, she asked for the umpteenth time about moving back to her town, and I told her that I just wanted to take a shower. BOY did she get mad and yelled at me and threw clothes across the room. I left, but I knew I should have taken the time to answer her question. That was at least the third time she blew up yesterday, so this morning I woke a bundle of nerves. I'm afraid of what the day will bring. I have emailed the agency helping me, they are lining up tours of facilities for me, added an extra day of having a caregiver etc. I'm trying to get her a new doctor here in town, but her insurance is making it difficult. I want to review the meds she is on and make sure she doesn't have a UTI since everyone says those cause lots of personality/mood issues.
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Thank you everyone for your answers, Sunnygirl your answer spoke to me on a pretty deep level. I do not think I'm cut out for this, before I realized how much her disease had progressed I thought I could make it work, but clearly all that she's been through has sent her tumbling.
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Ask your Dr. about Paxil. It comes in generic. Great for anxiety, depression and even helps with hot flashes.
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Fried flyer--she hated the AL facility, she wanted out of there, but what she didn't realize was that leaving there wouldn't afford her any more independence.
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JJGood, I just got through reading some of your postings from last year. I noticed that both your Mom and her husband [step-dad?] were living in Assisted Living.

Just curious why your Mom didn't remain at the Assisted Living facility? You did mention she wanted to live with you. Did she really want to go and leave behind any friends she had made?

With my Dad, who is in a senior living facility, if we keep him on a routine he manages pretty good. He does have caregivers in the morning 5 days a week, the other two he's on his own [I wanted him to be able to make his own choices and feel independent]. But if we take him to a doctor's appointment or out for a hair cut, that throws his routine off.

I am wondering if that is what is happening with your Mom. At Assisted Living she was in a routine.... she could be alone in her apartment but still feel safe as there were always other residents and Staff around in the building. That's what my Dad likes. If he feels too alone, he just opens up his apartment door and residents walking by will call out a "hello" to him. The resident across the hall does the same thing with his door. You think your Mom might want to return to the same Assisted Living?
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If you suspect your health is in jeopardy, you ware probably right. When I was first trying to be a caregiver for a dementia patient, my health really suffered. It wasn't until months later when it hit me. Take heed now. All the stress can effect your physical and mental health.

I would discuss my concerns with my own doctor, but I would also discuss your mom's condition with her doctor. Is she in need of meds? Is she anxious, obsessed, or in anguish? Is that what is making you so anxious? I'd try to ensure that she is as comfortable as possible. That would settle the situation somewhat.

I would read a lot about dementia, phases, behavior, etc. And not listen to people who haven't been in your shoes. Unless, you've been there, you most likely don't get it. People who make comments about how strong you are, how devoted, etc. don't necessarily realize what toll it really takes on the caregiver.

Plenty of loving family members do not devote their life to hands on, day to day care taking of a family member with dementia. Loving family members ensure the loved one is cared for, but some recognize that they are not suited to do it themselves. It doesn't diminish your love or devotion. Be realistic about your abilities.

I would try to settle in and stop trying to constantly amuse and entertain your mom. People with dementia may not respond to all that of that, due to confusion, memory loss and fear. Their brain may not afford them the ability to be happy most of the time. It's not your fault. She may be that way no matter where she is or what she is doing. All we can do is try to keep them comfortable and as happy as possible. Prepare for the time that she may constantly repeat things and constantly ask the same questions over and over. That seems to be a particularly challenging phase.

The progression of the phases is uncertain. Some may pass, but it may bring on new and even more alarming behavior. I wasn't able to get off the roller coaster until my loved one was placed in a Secure Memory Care facility. Her physical and mental progression is too severe for me to handle in the home. Some people do keep their loved on in the home. I would suggest that you obtain as much support and assistance as possible. It sounds like you have already gotten that arranged.

You'll get lots of information on this site as well as some practical advice. I wish you all the best.
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JJGood, here is an excellent article that I found here on AgingCare that might be helpful https://www.agingcare.com/articles/not-everyone-cut-out-to-be-a-caregiver-162192.htm

I know back 7 years ago when my parents [in their 90's] stopped driving and I had to become their wheels it was making me a nervous wreck... all the driving, all the doctor appointments [counted 40 in one year, many were constant follow-ups]... got to a point of me having panic attacks while driving. Move forward to today, I still find myself shaking even with a tranquilizer. My Mom refused caregivers, refused even cleaning services, refused to use a walker, and all those stairs in their home, someone was always falling, mainly my Dad. Hello, I was a senior citizen myself with my own age decline.

Therefore, if you are feeling anxiety now, call in the troops [caregivers] but don't use your own funds, the cost has to come out of your Mom's retirement. Hopefully with the caregivers helping you, since Mom is under your roof, you will feel better. You might find you need to add extra days to the caregiver schedule.

Lot of us aren't prepared for caregiving. It's not on our resume. We never been trained. For myself, my parents never took care of their own parents so they didn't realize what stress they were putting me under. And also what happens is that I become once again the child and they took on that parent role... therefore I was "the kid" and what did I know :P
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Oops hit send to soon..

About your anxiety it never goes away! You just get used to her behavior and kinda know what to expect.. You know what is important and what's not.. You will have to learn to let it roll off your shoulders!

Make sure her anxiety issues are addressed also... Anxiety gets worse as the dementia progresses..

Good luck.. Dementia sux!
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I would call your local Elder Affairs and get her in an Adult Day Program... The interaction with people her own age is priceless...
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