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Where Do I Start?(6)
Margie!19
Posted: Tuesday, June 11, 2019 8:49 PM
Joined: 6/11/2019
Posts: 1


Hello! Just joined the group. Glad to have found this place! To give you some background on my situation - My mom was diagnosed with dementia in February of this year but we suspect she’s had it since last August. She lives on her own still but I go over there several days during the week to check on her. I’m also in charge of all her medications, arranging & taking her to all Drs appointments & her finances. I have 4 siblings but only 2 offer any help at all. Another one lives too far away & the other flat out refuses to help. So most of the caregiving falls on me. 

I get so frustrated with her even though I know it’s not her it’s the disease. I am wondering where do I start? Is there a place on this website that will give me tips on how to deal with her when she’s driving me crazy? Is there a book I should read? I have done no research up to this point.  I work a full-time 50+ hour week job, have a family of 3, foster cats for a rescue group & raise Monarch butterflies so I honestly don’t have time to shift through websites for hours & hours on end.  Thanking you in advance! 


John1965
Posted: Tuesday, June 11, 2019 8:53 PM
Joined: 8/19/2016
Posts: 316


Sorry you had to find us, but welcome. 

Try the Alzheimer’s Navigator button at the bottom of this page as a starting point. 


MinutebyMinute
Posted: Tuesday, June 11, 2019 9:27 PM
Joined: 6/11/2019
Posts: 190


I just joined tonight myself! Been dealing with my mom for years but it's only been the last 7 months or so that I can't leave her on her own. (She lives with me.) Like you, I work full time and I bought a house last year before she started going down so quickly cognitively. She was all for it ... then dead set against it. Only recently got us moved in between her fighting me every step on the way, ongoing health issues with both of us and her failing cognition.

Every day poses a battle of some kind. I'm learning that you really can't argue with them (even though I still do). I refuse to play into her delusions because sometimes, if I phrase it just the right way, she'll snap past it.

If they tell you to shut up, for both your sakes, just do it. Walk away. Go to another room. Sometimes 15-20 minutes are like days for them and they don't remember what just transpired. Take lots of deep breaths. Go outside and swear profusely.

When you get home, drink a tall glass of wine. Listen to your favorite music. Call a friend.

These are all things that have helped me. But here's the best one of all:

Whenever your mom as you knew her is present, CHERISH it. REVEL in it. TREASURE it. And call upon those memories at the very moment you can't stand another second and just want to strangle her. Won't always work, but more often than not, it does. Good luck!

 


Abuela
Posted: Wednesday, June 12, 2019 7:57 AM
Joined: 6/24/2012
Posts: 361


Google Teepa Snow and there are some videos that are helpful.  It's human to lose patience.  It's not their fault and it's also not your fault.  Deep breaths.  Long walks.  Journal.  Let it out somehow.  Good advice given above.  Good luck.
SelEtPoivre
Posted: Wednesday, June 12, 2019 8:18 AM
Joined: 3/8/2018
Posts: 788


“The 36 Hour Day” is an excellent resource, and IMO the closest thing to an “Alzheimer User Manual” out there

Naomi Feil’s “Validation” book is very good, but a harder read

The Insight Timer meditation/relaxation app is wonderful to help destress and unwind before bed

Links from this site:

Communication skills https://alzconnected.org/discussion.aspx?g=posts&t=2147521813

Important information for new members https://alzconnected.org/discussion.aspx?g=posts&t=2147521814


caregiving daughter
Posted: Wednesday, June 12, 2019 11:13 AM
Joined: 11/27/2012
Posts: 2066


I did what you did for a while and it was rough. Probably went on for almost a year. Big exception though was that I was a stay at home mom at the time. I don't know about mixing in work. Anyway, I would stop by most days--sometimes twice a day. Some good days but a lot of not good days. I would drop in at 3:00pm and mom would be sleeping. I would drop in at 7:00pm and mom would be sleeping. Pill box was off. I would get emergency calls that she ran out of pills and she had some explanation about BCBS can't refill a prescription until you were totally out. Dent on the car that she refused to talk about. Took a call from her home from a scammer that said they were her grandchild. Learned she let strangers into her home. I could go on and on. I saw a dementia class in the newspaper at a local care community. It was a couple hours for three weeks. The amount of resources I got in those sessions was invaluable (list of docs, attorneys, social workers, day care facilities, mc's, veteran's aid, and on and on). I also cried and people there understood. After the class, I knew I had to get out of the "scrambling day to day" and come up with a long-term plan. In the midst of carrying out the plan for a paid caregiver to come in several times a week, I got a bad cold. Long story short, being away for several days led to big problems and pretty quickly mc. I would encourage you to learn all you can about this illness and make a long-term plan. You are going to get a cold, you are going to need to go out of town, you are going to need to focus intensely on work at times, and there are times you simply will not be available. Maybe you are super lucky but my siblings didn't change and therefore, were not resources. Your mom needs you and you can do this. You can't do this alone though.
Eric L
Posted: Wednesday, June 12, 2019 11:46 AM
Joined: 12/5/2014
Posts: 1078


I'll just offer two bits of advice.. the disease is probably more advanced than you realize (I think this happens to every caregiver) and to be decisive and take charge.
Cher1964
Posted: Wednesday, June 12, 2019 11:50 AM
Joined: 1/3/2019
Posts: 1


There is so much in my head, I’m not sure we’re to start. My mom was diagnosed about a year and a half ago. I was working about 50+ hours a week and my boyfriend, bless his heart, was watching her so I could work. He is out of work on disability. Back in January of this year, she was diagnosed with bladder cancer. They removed the cancer in February (thank god). Since the surgery she has gone down hill a lot due to them putting her under for the surgery. Now, I had to take early retirement as of April .  She does not want to be left alone with my boyfriend anymore and I cannot find a good nursing home for her that is close to me. She only wants to go to one place for nursing home. The wait list is so long on a lot of these places. 

My mom has 4 kids,  2 of them live in another state. The other one doesn’t seem to want to help me out. I feel like I am alone to help her. She does not drive, she no longer does any of her meds, she falls a lot and refuses to use a cane or walker. She has now started other medical issues that are not pleasant to deal with. She has to wear depends and does not always make it to bathroom. She has potty chair in her bedroom, next to her bed and she still doesn’t make it. She wakes up about 3/4 times a nite to go to bathroom and I have to constantly hear her in case she falls. Since November I think she has fallen about 4 times,  and 1 time, fractured her left rib. I am trying so hard to take care of her, but most times feel like I am doing it all wrong. 

We can’t go out anywhere without mom because she can’t be left alone anymore. When we do go out with her, we have to be close to home because of her bathroom issue . My boyfriend is a great guy and understands her needs, but he is a guy and mom only wants me. This makes it soo hard most of the time.  I love her so much and only want what is best for her.  I needed to vent and thank you for listening. 

Helpless 64


Dot9000
Posted: Wednesday, June 12, 2019 12:50 PM
Joined: 6/12/2019
Posts: 44


MinuteByMinute:

 Thank you for your post. It meant a lot to me as I can relate to some of what you said.
 Wine, yes. Thanks for that. Take care.


Gig Harbor
Posted: Wednesday, June 12, 2019 2:39 PM
Joined: 3/10/2016
Posts: 555


Cher you sound like a wonderful and loving daughter. My thoughts on your situation are this. You are in this journey together with your mom. You are both important and don't ever feel guilty for the choices you have to make in her care. She will never be happy 100% of the time. You deserve to be happy too and to have a life with your boyfriend. Managing this minefield takes compromise from both the patient and caregiver but the patient is unable to see that. She has a diseased brain and you can't let her control everything. You might need to place her in a facility that is not her choice and that is OK. Keep her safe, clean, fed and loved. Sometimes you can't do that at home and then you do the next best thing. Never feel guilty for not living up to her expectations. If she were in her right mind she would never want you to feel like that.
althomas
Posted: Wednesday, June 12, 2019 4:23 PM
Joined: 9/11/2017
Posts: 19


Teepa Snow on YouTube, The 36 Hour Day and Chicken Soup for the Soul pertaining to Alzheimer's and Dementia.
I work a 40 hour a week job and spend 3 nights a week with our mom. I felt bad about leaving my husband to tend to the farm, basically on his own, but he was understanding and stated that sadly, this wouldn't last forever (my spending nights at mom's). I find a short walk, some calming music, a good story book just to get lost in or a really good massage helps release some of the tension.
 We also have incorporated a small white board to write important stuff for mom, like so and so is coming on Tuesday with the date written out, or "drink more water", or "have a good day". Sometimes she will write "thank you" on the board. Her spelling and writing is getting worse, but we know what she is saying.

Above all else, remember, as bad as it is for you, it is much scarier for them. My mom watched her dad slip away from this disease, so she knows where she is headed and how this will end and that scares her more than anything. We remind her that we will always be here for her, even when she won't remember us, and then we go look at the flowers, or watch a cartoon, or work on a little puzzle.
 Hugs and prayers for you and your family.

 

 
  


 
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