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Struggling(3)
TrishD
Posted: Wednesday, June 13, 2018 9:21 AM
Joined: 4/21/2018
Posts: 21


I want to reach out because I'm struggling with my mom and changing my life completely. My mother has dementia (Alzheimer's). Rehab diagnosed her as moderate stage, which does not tell me anything. I've been crying alot because I moved back to my moms in the suburbs and left my place in the country. I don't want to see my mom in a nursing home and my brother suggested I take care of mom. So I resigned my position, which I loved so much and moved in with mom. I'm 53 years old and I feel like my life is over. I don't mean to sounds cold, I love my mother. The home health aides weren't working out because they would ask her if she's hungry. She doesn't know she's hungry. My mom is 78 years old, she has diabetes, high blood pressure and cholesterol issues, of which she is on medication for. She's also taking mematine for her dementia. I just feel so helpless and miss my life.
D in law
Posted: Wednesday, June 13, 2018 9:37 AM
Joined: 4/24/2017
Posts: 345


Hi Trish. so sorry for your situation.   There are many good folks here so never feel bad about reaching out, asking for help, or just coming here to vent.

First, your life is not over.  You have already done a wonderful thing moving in with your mother.  You do need an exit plan though.  Things will only get harder from here, it's best to have a plan of care now for the future, and I'm sorry to say it very well includes placing her when the time comes.  You also need to find out if your brother is willing to help with her care.  You should not be doing it all by yourself.

I also moved in with my Mother after my father died suddenly and I knew she didn't want to go into assisted living.  She also had many of the medical issues your Mom has. My siblings and I agreed that my staying there was temporary.  While I admit the day we moved her out of her home was one of the hardest days of my life, in retrospect, it was the best thing.  She did well there once adjusted and I was still very much a part of her daily life.  


TrishD
Posted: Wednesday, June 13, 2018 10:00 AM
Joined: 4/21/2018
Posts: 21


Thanks D, I needed to hear that. When I first agreed to thus I did tell myself it was only going to be for two years but I am finding out she may live for many years. How do we go about finding a home for the future?. My brother does help but he lives in this area so nothing changed for him. I know he glad to have his sister home but I've lived in the country now for 20 years and now I'm back at mom's, it's been a struggle. I cannot move her to my home because my brother won't travel. This is okay cause mom is calmer in her own home too. Thanks again for your reply. I was posting all over with no input. You made my day
SelEtPoivre
Posted: Wednesday, June 13, 2018 10:17 AM
Joined: 3/8/2018
Posts: 562


Hi Trish, welcome to the group: on Wednesdays we wear pink, and you can sit with us

 

Having (or getting) some paperwork in order will help you manage easier as a caregiver. This includes a current will, financial power of attorney, healthcare proxy and living will. Know where your moms finances/assets are, too. An eldercare attorney can help put all of this together...which should include your brother to discuss how care and arrangements will be shared

 And if you mom has sufficient assets, consider executing a "family caregiving services agreement" where she can pay you (equal to the local rate of home health).

 

Please keep in mind that if/when placement is the safest care option for your mom, you are not abandoning her, your role as her caregiver is continuing in a different phase and location.


D in law
Posted: Wednesday, June 13, 2018 10:21 AM
Joined: 4/24/2017
Posts: 345


Quite alright Trish.  What was your mom in rehab for?  I am assuming she was released to your care and you are now second guessing your decision which I can certainly relate to.  There are many resources here -or if there is someone from rehab that was to check up on her I would start there as someone local to contact.  Also, usually your county or some level of local government has a dept. of aging.  I would definitely recommend reaching out to a social worker.  They would come and access your Mom and let you know of different things she may qualify for, like a life alert necklace, a subsidy for an adult day care, transportation, etc.  Things like that.

As far as looking for facilities, it's hard to advise on where to begin, it will all depend on your Moms financial situation.  If you have a few bucks handy, they also have folks called Senior care coordinators, that for a fee will walk you through everything.  Social workers do this as well, just not as well as when you self pay someone to do it if that's a possibility.  I hired one for my in law's family which was very large and diverse.  It was nice for a while having someone give updates on medical appts, aid application status, she did it all.


TrishD
Posted: Wednesday, June 13, 2018 12:01 PM
Joined: 4/21/2018
Posts: 21


Wow, this is all such great information. I'm glad I found this site. I'm a firm believer in support groups. She went to a rehab after not eating  and not taking her meds. While in the hospital found she had a UTI, which worsen her Alzheimer's.

She fell due to not eating she was very weak. I've been here with her now for three weeks. She's getting stronger. But her legs will never really be strong enough for her to live alone I'm sure. 

Some days are better than others but she eats three meals a day. She's tired more days than not. We sit outside everyday. She naps and I tried to get her to color to keep her awake since she can't walk very well or very long. 

We have physical therapy coming out twice a week and a nurse once a-week now. Not sure of the stage she's in. They told me moderate stage? 


MimiMinder
Posted: Wednesday, June 13, 2018 12:07 PM
Joined: 4/23/2018
Posts: 91


Hey Trish, 

I am glad you made your own post to tell us about your situation. I saw that you had also posted as a reply on someone else's topic, and that often might not get you the responses you are looking for. (Hopefully that makes sense -- but when I saw 'struggling' as the topic, and realized it was a new post, I wanted to see if I could offer any fresh perspective.)

I, too, am 53. I stopped working a part-time job in order to have more time to help my mother. She lives in AL, in the same town, so even though it is not 24/7 care, I spend a lot of time managing her life. When the time comes to place your mother, I would imagine you will still be involved to ensure things are going according to plan. I would say that I am my mom's biggest advocate and her primary caregiver, even though she lives in a staffed facility. Her memory issues are such that she cannot make new connections at her facility, and all of her 'old' friends must be afraid that this is contagious for they have all scattered to the winds. 

It sounds like your life is not over, but that you have pressed pause on your personal and professional needs. I would encourage you to make sure you don't let too much time pass before you come up with a plan to once again lead the life you have envisioned for yourself. 

This forum has been a life saver for me. I also went to counseling for a period of time and that helped me with the whole grieving process. Even though my mom is still alive, I am grieving for the mom I had. As I have told others on this forum, I adored my first mom and I am adjusting to this new mom. I miss the old mom, but she won't be coming back, so I am learning to find moments of joy with my new mom.

Wishing you well from afar ~ Diana


TrishD
Posted: Wednesday, June 13, 2018 12:08 PM
Joined: 4/21/2018
Posts: 21


Thank you Sel for that information. My brother is paying me to take care of mom. Which is why I was able to resign my position. My brother has power of attorney, which we both agreed to when Dad passed away.  Mom does have some money. We are working on getting her supplemental insurance, which we didn't realize Medicare doesn't pay all her bills or long term care. By August we can reapply due to her hospitalization in May.  I'm just so relieved to hear that my life isn't over. Thanks again D for writing that.
MissHer
Posted: Wednesday, June 13, 2018 12:25 PM
Joined: 11/13/2014
Posts: 1972


The gifting yourselves money might get you in trouble if your mom needs to go on Medicaid. Just a warning. If she ends up in a facility and her assets are depleted and she needs to go on Medicaid you will probably have to pay it back. There is currently a 5 year look back period.
TrishD
Posted: Wednesday, June 13, 2018 12:26 PM
Joined: 4/21/2018
Posts: 21


Thank you Diane, this has been helpful. I'm glad it was suggested to post my own topic. I am a Drug and Alcohol Counselor, so I truly believe in counseling. I also have a counselor but won't see her til Aug 3rd when I go home for two weeks. I believe in self-care as well.  I just don't think my employer will hold my job open for too long. And I think I need to stay for a couple of years at least. I will be starting a plan as suggested for transitional care for Mom. Thank you all for your input
TrishD
Posted: Wednesday, June 13, 2018 12:30 PM
Joined: 4/21/2018
Posts: 21


My brother spoke to a lawyer about this and he seemed OK with this. But I will let my brother know.
MissHer
Posted: Wednesday, June 13, 2018 12:46 PM
Joined: 11/13/2014
Posts: 1972


Oh that's good!! Everything goes through an attorney that my mom hired. The money that I get for mom's care even had to be court approved. (most likely due to the bank trustee that we hired) They always keep their butt covered.
NC caregiver
Posted: Wednesday, June 13, 2018 2:09 PM
Joined: 2/7/2018
Posts: 650


HI Trish . So sorry you are on this road but you will get good support here.  I'm similar to you in that I quit my job in December to care for my Mom who has moderately severe Alzheimer's.   We chose to move Mom in with us & my brother who lived near her is taking care of her home until we decide what to do with it.   I'm 54 & also thought this would be for a year or two & then would go back to work.   Then I see that many have been on this road for many years.  I'm taking each day as it comes.  Study posts on this sight& videos on YouTube.   I have learned more here & reading books than from Mom's doctors that's for sure .  Hang in there - we will get through this.  Your Mom is worth it & I've been told you won't regret knowing you did your best for your LO.
RanchersWife
Posted: Wednesday, June 13, 2018 3:19 PM
Joined: 3/14/2018
Posts: 99


Maybe find a part time job similar to your old one...maybe it's ok if you use all the money make to pay for a caregiver while you are at work... You will have a life and a break.
TrishD
Posted: Wednesday, June 13, 2018 6:07 PM
Joined: 4/21/2018
Posts: 21


Thank you, I feel the support already. Was feeling hopeless but you all have made me feel so much better. My husband and are taking this one-day at a time thats for sure.
TrishD
Posted: Wednesday, June 13, 2018 6:14 PM
Joined: 4/21/2018
Posts: 21


NC thanks for the positive advice. This all really helped me work this out in my mind. Keep the stories coming it's giving me hope and strength.
Eric L
Posted: Wednesday, June 13, 2018 8:42 PM
Joined: 12/5/2014
Posts: 708


I’d also try again with another helper. Even though they might work for an agency, they also work for you. Give them a set schedule and tell them ‘Mom eats at noon. She likes to have a ham sandwich, apples, and sweet treat for lunch. You’ll need to make it for her and tell her it’s time for lunch. If you ask her if she’s hungry, she’ll say no but it’s very important to keep her on a set schedule.’
TrishD
Posted: Thursday, June 14, 2018 9:51 AM
Joined: 4/21/2018
Posts: 21


Eric thanks. I will be going home at the end of July for two weeks. And I have been writing some notes for a home healthcare we're going to have take care if her while in gone. I'm gonna see how it works for two weeks and if it does I may not have to resign my position. My brother wants me to stay with her but he doesn't seem to understand I need to have my life too.
ExpressoTime
Posted: Saturday, June 16, 2018 7:29 AM
Joined: 3/11/2018
Posts: 548


Get your life back! 

Caregivers can easily be told to help with meals and not just listen to "I'm not hungry". That's a very easy thing to deal with.As for refusing to eat, that would be highly unusual, only very late stage. Just put it in front of them. It's the least a caregiver could learn to do. Basic stuff! 

I know the pull to sacrifice...I considered it myself, it would have been life changing to move to take care of my mother too. And then one day after having given up 5 days of my life to care for her again, she didn't remember I had been there just days before. I woke up at that point. I woke up to that it's not going to matter if we sacrifice, as many times as my mother was grateful, and told me so...in the end they aren't going to remember. If you do it, you have to do it for yourself, and I'm not seeing it in your case, that it betters your life. 

 


VKB
Posted: Saturday, June 16, 2018 4:00 PM
Joined: 12/4/2011
Posts: 3356


Trish, the only way you will survive this caregiving is if you find the right person to be your relief help. One person really can't do it alone....burn-out and depression can make you sick all over.  Please don't give up finding the right person to help you.  I did and that made all the difference.  Sent up a prayer for you and your mom. Peace Veronica
Sather56
Posted: Saturday, June 16, 2018 5:43 PM
Joined: 5/30/2016
Posts: 554


I'm sending hugs and understanding to you and your mother. The moderate stage is the hardest, because you see your loved one, really showing the changes we all fear. Whatever decision you make for your LO, don't look at it as failure. There really is no right or wrong way to care for someone with dementia. It depends on what needs and cost suits your situation and family. Cry if you need to. There is no shame in tears.
melanyheart
Posted: Sunday, June 17, 2018 4:18 PM
Joined: 8/28/2017
Posts: 6


I too am struggling!  My mom has been living in CO by herself with a family member working 40 hours a week. She is at the point she needs more care, but she won't let anyone in her home.  Because we figured there is no way on earth we can get her to allow someone in (she doesn't think she needs any help at all, not even cleaning), we opted to bring her on vacation to my house in WA. The plan is to make it a permanent vacation, she just doesn't know it.

She arrived less than 24 hours ago and didn't know where she was or how she got here. So I put her clothes in a dresser and I thought - this will be easier than I thought.   However, today she keeps saying she is ready to go home and is more lucid than I've seen her in a long time.  I have to make this work, and I have to keep her here. She cannot live alone, she refuses any help and is absolutely against going to an assisted living facility.  I need help/ideas on how to do this and fast!  It's stressing me out so bad that I am about to lose it. 

I've already arranged a full-time caregiver, so I will have some reprieve, but my mom has always been a real mean and angry lady and if she starts that because I am holding her against her will I am not sure how I am going to survive this.   Anyone out there have a similar situation?  Please help!

Melany

 

 


Sheen66
Posted: Monday, June 18, 2018 1:39 PM
Joined: 6/10/2018
Posts: 51


Just chiming in to say there’s another member here of the “in our early 50s” and taking care of Mom club. I also had to put my career on hold. 

Everything is covered above; nothing particular to add. Just posting in solidarity. 

 


lesliegeller
Posted: Monday, June 18, 2018 3:48 PM
Joined: 5/10/2018
Posts: 77


Hi Melany,

I understand! I brought my mom to live with me after  my dad died and she had no idea where she was or how she'd gotten here. She said she should be going back to her home every morning. I was honest and told her she lived with my family and I now. I told her why (alzheimer's) and just a few of the reasons (getting lost, catching a pan on fire...). I told her she doesn't remember things so well and so this all may sound strange. I told her I loved her, wanted her to be safe, I was so happy to have her here with me and it would all be ok. I decided to try this approach because I am a terrible liar, and I figured if it didn't work, she would likely have forgotten it in a few minutes or by the next morning anyway. The rational part of her got it and she was happy to  be with me, as there really is no one else.

She may become more comfortable being there after she's been there for a while, my mom did. Even though she couldn't remember. (If that makes sense...) She no longer asks to go "home."

I hope you find your way to work it out. Good luck, take care and don't forget to breathe.


lesliegeller
Posted: Monday, June 18, 2018 4:09 PM
Joined: 5/10/2018
Posts: 77


Hi TrishD,

I understand! I am also 50 something and I quit my job, which I loved, to become the full time caregiver for my mom who has AD. I moved her in with my family and I. I cannot even tell you how many tears I've shed since taking this on! I know what is to feel that you have given up your life! Whatever you are feeling or thinking...it's all ok. Let yourself feel. It's all part of it. And remember, you are doing an awesome thing, and it is really, really hard! So don't be hard on yourself (this, I realize, is hard). Get some help for sure. Be specific with what you want the help to do. They are working for you. 

There are lots of resources about the different stages of AD. I looked them up and pretty much figured out where my mom was. This web site and for sure this support group are both super helpful. I have found that receiving as well as giving advice are equally therapeutic for me. 

I wish you the best, and please know you are not alone!

http://act.alz.org/site/DocServer/sevenstages.pdf?docID=16881


Blessed4life
Posted: Monday, June 18, 2018 7:54 PM
Joined: 6/1/2018
Posts: 8


Hi Trish D 

I understand exactly what you are talking about, I am in my mid 50’s and I retired from my job 4 years ago to care for my mother. My husband had been trying to convince me to retire a few years before I decided to (so that we could travel the country). When I finally did retire my mother moved in with us the same month, because she was visiting us and became ill and was unable to care for herself. I am sure you have guessed I still haven’t traveled the country like I anticipated because it is difficult to find someone willing to stay with a dementia patient overnight and I can honestly say I can not blame them because you never know what you will experience (delusions, hallucinations etc.). This is a very hard job and only those dealing with it first hand understand the struggles. Don’t feel bad if you must place your LO in  a facility because you have to take care of yourself first.  Hang in there. 


Ayla V
Posted: Monday, June 18, 2018 9:40 PM
Joined: 6/13/2018
Posts: 2


Hello! I have been going through some of the similar things you are. My great grandmother raised me ever since I was two, and now that I am 18 who knew I would be changing her diapers. Its honestly the circle of life. And most of the time I feel as tho I have lost my teenage life to stay at home and be a full time care giver but she did it for me when no one else would. You have to take it one day at a time, and think if she were to pass you would regret it if you wouldn't be there taking care of her now. She needs you more than ever. Doesn't make it any easier. Just stronger. My great grandmother (Susie) has been diagnosed with moderate to sever vascular dementia and has progressed in as little as December to now. Completely mild to almost completely gone. She frustrates me every day and I feel terrible for getting mad but its natural her doctor said. They had her on Memantine which helped for a month and proceedingly  gotten worse. No other family member will help other than me so I am kinda alone for all this.Since I just finished high school, the school itself had to work with me by letting her come to school with me until I finished all my classes. Now that I start college in the fall I am trying to get choices through Tenn-care to come out and sit with her throughout the day so I can focus on my schooling. At the same time as we need to take care of them we also have to look over ourselves and our futures. My life has just started and you were living right where you wanted to be! Doesn't mean it all has to stop just altercations to fit both sides and needs. 

It seems as every day we have the same conversations as we do the day before except she doesn't know who I am and trash talks me to me because nothing registers anymore. Why is the floor on the floor basically. But she has forgotten how to use her phone and thinks its broken. Doesn't know how to operate the TV, Oven, Microwave, phone, ANYTHING! So its literly like taking care of  a child. Taking a shower is a difficult task as well. Trying to get her to eat and figure out what she wants to eat. Changing clothes. Anything you would do with a child you would do with her. She loves to play and has to be the center of attention. But whats really bad in all this, she still has control over her finical choices and writing checks (WHICH IS NOT GOING WELL) and has put herself into debt. I am trying to legally fix this with her permission but its really difficult when she has no idea what is going on and is super paranoid that everyone is out to get her because she knows something is off just can't put all the pieces together. When we took her license away was a big step and let me tell you it didn't end well. She still to this day wants to shoot the sheriff because she thinks he took them! But I can help you with the knowledge and experience I have whenever I can... Sorry for the long comment.


 
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