Feel soo guilty

Michel2020

Hi,

My mom was diagnosed with Alz a year ago and she still lives at home alone and I go over a few times a week, call twice daily and have recently taken over all her financials. This is not even the hard stage of Alz- she is actually pleasant and doing all she can to take care of herself. I feel overwhelmed and have started to feel resentful and trapped in the thought that I will have to do this for years. I work full time, my mom and I are not close and I basically feel like a terrible person for these feelings. I am the only one helping her, but she does have finances to support having someone come into her apartment when needed (which will be soon) but I still have to take care of all the financials, doctor's appts, her horse and dog needs...while trying to be a wife, employee and have sometime to myself (which has not happened so far this first year). I know people survive this, but how do you stay sane? I have started doing therapy, go to coda support groups and have signed up for a Alx caregiver support group- but it is hard to attend because I work and they all seem to be during the day. Just let me know if anyone has suggestions. Thanks for your time. Michel

M1

Hi Michel. Lots to unpack here. Are you an only child? Or are there other family members who can be consulted or called upon for help? Are your mother's financial resources such that you could hire a care manager, or move her somewhere with more assistance? That might ease your burdens somewhat. And I'm struck by horse needs? Maybe time to change that. Something is going to have to give and it doesn't need to be your health or your sanity. So sounds like you need to make some decisions about what you can realistically do, what help can be purchased, and what circumstances need to change, including her animal ownership and living situation. Good luck, there are lots of wise, kind, and experienced caregivers here.

towhee

Hi Michel, welcome to the group.

You do have a lot to think about. Regarding support groups, a lot of them now meet virtually. You could find one that meets in the evening even if it is not local. A couple of people in mine live 2 hours away, it is not a problem. But I would advise starting with one or two such groups and not overloading yourself. 

The one constant about Alzheimers is that care needs change. You go from minimal supervision to needing someone there during the day (or night) to 24/7 care. Sometimes that change seems to happen overnight, sometimes it creeps up on you and you realize needs changed two months ago. Even without a full time job it is important to sit down and have a good hard think about what you can and cannot do, and about what only you can do. With a full time job, even more so. For example, if you are the only one in your family who can do the financials, who can make care decisions for your mother, those will be long term responsibilities. You need to maintain your ability to do what only you can do. Physical caregiving, from doctor appt taking to dog care, if you have the money, can be given to someone else. Most caregivers try to have a Plan A, B, and C. Plan A is usually to identify resources that will help you to keep your loved one at their home or your home.  Plan B is to identify several Assisted Living and Memory Care facilities that will be a good fit for your LO, and Plan C,  rehab and Skilled Care facilities if you should need them. Some look at CCRCs which have a continuum of care. This is a marathon and you cannot do everything. If you try to do this completely by yourself no amount of support groups will make it possible. 

In the short term, look at what you can stop doing right now. Perhaps you can hire someone for some of the doctor appts. Perhaps you can hire a companion one day a week to do activities with your mom. What activities is your mom doing now, is she driving, getting her own groceries, cooking, taking care of her own meds, riding the horse? As she stops being able to do activities it would be good if someone, not you, is available to pick these up.

And um.. apartment? horse? If she is not riding that horse and it is just boarding and eating its head off, perhaps there is someone who would love it and take good care of it, and pay for it by the way-

Wish you well-

Michel2020

Thank you M1...yes, I am the only family member willing to do anything and I am the only child. I did not know a care manager position existed and I have done everything already...but, when she does need to go to assisted living- I will employ a care manager to help with all of that- so thank you for that suggestion. Thank you so much for reaching out. Truly.

Michel2020

Great suggestions and I will look into assisted living which could transition to a memory care unit later. I really appreciate the help...sometimes it is all jumbled in my mind and feedback really helps me get back on track.

search4innerpeace

You are not alone!  I also had guilt when it came time that mom needed more assistance due to the progression.  I work full time and have young kids.  I did think about having mom move in with me along with other ways I can take care of her more.  Through soul searching I did acknowledge that I would not be able to extend myself to that extent and that already my mental health and family was suffering greatly.  Everyone handles stress and the juggling of "life" so differently for everyone.  That is ok!  My mom moved into a memory care unit and it allowed me to still be involved in her cares (e.g. still took her to all appointments) but also allowed me to be just a daughter at times.  Mom would get upset when I assisted her with personal cares, so that is where I decided it's ok to stay in just the daughter role at times.  It provided that balance I personally needed.  I do not love my mom any less than someone else.  So yes, I resonate with previous comments.  Don't feel guilty asking for help and it can be as little or as much that is best for you and your LO.  Take care!

Michel2020

Thank you so much for your post. It really helps to see other people setting healthy boundaries.

CHRISTY10

Hi. This is my first post as I just joined this group. Your title caught my eye as the guilt is overwhelming for me as well. My dad had a stroke 5 weeks ago and is still recovering in rehab. I moved my mom in assisted living (selling their house) and 4 days later was moved to memory care. I know that is where she belongs but she calls constantly asking to be picked up and pulling on my heart strings. I work ft and have two teenagers. I took caregiver leave last week to give me more time to manage both parents care. My only sibling lives in Florida and tries to help with visits etc. Subdowners and being alone at night is my moms biggest struggle. She loves the activities at the center so I know she is in the right place. But the guilt still gets me of why didn’t I move her in with me and do her care. I read last night to not fight the guilt feelings but learn to accept them and process them. They are normal. Focus on the positives so I focus on the companions my mom has acquired over the past week along with the dancing and activities I have seen her participate in. None of which she would have in my home as I don’t have the skills nor time to focus working FT. Hope my post help you - you are not alone. Feel free to connect with me Christy

Ps take one day at a time

May flowers

Christy, if it makes you feel any better, we did move my FIL in with us last year (we chose to do that at the time due to covid). In hindsight, minus covid, he would have been better off moving to MC. He was still lucid enough to adjust and communicative enough to make friends.

 I am not sure how he will react now as we are moving him in the next week or so, he is a lot more withdrawn and confused than he was 9 months ago. He can still do daily tasks and that made my husband hesitant to move him, but he has come around now realizing he may still be able to get to know his caregivers and become more familiar with surroundings. 

It is good your mom loves the activities and it sounds like she is in the right p,ace. As for the pulling heartstrings, I think that is just how they live in the moment. I don’t think people with dementia remember the good things, even things that happen that day, so when something makes them unhappy, the world is ending. My FIL is like this and he still lives with us. He could have a great day full of laughter and activity, and by day’s end he is agitated and sad. I don’t think location matters much for these changes in emotions, it is part of this horrible disease.

Michel2020

Hi Christy,

After all of the feedback people are giving and reading other posts...I am starting to think that we might skip having someone come into her home to help and just go straight to assisted living...so she can adjust while she is in stage 1- have fun stuff to do and then as things progress...be able to transition to memory care. I think we want to do our best by our parents which we think means having them come live with us...but with Alz...maybe this is not the best way after all. Hang in there and keep her in care...try to do some self care for yourself (which is so hard to do, but it really helps with the stress and the feelings of guilt). 

Michel

Michel2020

Thankyou May Flowers for your post...these really do help with trying to make the hard decisions and processing all the feelings that come along with being a caregiver. Michel

Klgm326

Michel, I am an only child, and I totally understand what you’re going through. When she first went into assisted living, it was an incredible relief. She was happy and engaged and even began to dress nicely again Of course after a year of Covid and worsening symptoms, we had to move her to Memory Care about a month ago. I have felt tremendous guilt—not being able to freely visit and her “stuck” in there “alone.” Today we were allowed in her room fir the first time and it was wonderful. I saw how many helpers were constantly walking by her room and everything is right outside her door. She is “difficult”—very OCD (since before her illness, but now it is truly pronounced. Nothing is ever good enough. But they are wonderful. It’s Saturday, and the director (over both the assisted living (separate building) and the memory care was working her ...off, helping residents and colleagues. But you MUST live your life. She will be ok. AL will be wonderful for her, especially now that restrictions are lifting Many hugs from a distance. Just find “the one” (you’ll know when you d Best of luck!!

Michel2020

Klgm326 Thank you so much for your post. Do you mind telling me if the transition from assisted living to memory care was easy? Was the switch in the same facility? Just trying to plan ahead. Michel

Salsam

This is a great thread...helping me so much.  I am not an only child but my brother lives in another city and we talk daily, but he has never had children, so I am the one who has done huge amounts of caregiving, starting in 2016 with my aunt who died of cancer, then my uncle with Dimentia came to live with us in our home with my dad who had Dimentia at the same time.  

My uncle died after a year from a stroke...and then we brought my mom who had moved to the city I grew up in to Independent Living --she thought she would just go into all the places over there...but that made no sense since we have no family over there anymore. 

I had them both here in my house for 4 1/2 years...when Covid first began, I was almost relieved...I was the fulltime caregiver...they were still manageable and I somehow worked remotely and managed that, too. 

Someone wrote on here that often you care for them until about 2 months past when you just CANNOT DO IT...the disease is so gradual, and the guilt or some of it is not guilt just GRIEF...

I think I somehow thought I could stop or slow down the progression.  It is possible in familiar surroundings it is slowed down, but they have now been in Memory Care for 3 months exactly .

I blamed myself thinking I hastened the progression because my mom seemed to deteriorate so fast at first...they misdiagnosed her and put her in Assisted Living which lasted one week. 

Since my parents are divorced but never remarried, they miss each other, but the facility has to keep them separate or they drive each other crazy.  

I liken all of this to if somehow someone dropped me off in China on a very busy streetcorner and said, "Hey, have a great life....I'll see you when I see you."  There are nice people here. 

It would be TERRIFYING...and stressfull...and there would be all kinds of different people...some WOULD be nice.....others would ignore you...others would rob you...

Of course, in the facility they are GOOD people and they are trained, but if you cannot see (which my mother cannot) and they change the person who bathes you...you might feel attacked so you might punch someone....(which she did) or you might pee on the floor in the dining room when it is empty  (which I observed) and then ask me when I took her to the bathroom, "Is this one of the regular toilets, or the other kind.?"  

My dad , on the other hand , had his anxiety grow to the point of pushing his walker into people...and then maybe you have one caregiver who is insisting that he sleep and stay on a schedule...and that provokes an angry reaction, while another caregiver tells me,  "Oh I just showed him pictures of puppies and cats on my cell phone and he was happy." 

When I visit my dad has hung on to me and said, "Don't leave me....you CAN'T leave me!"  So it is a bit scary to visit...but luckily I have figured out which caregivers are the most helpful...and I am praying that with change of meds...he adapts...Sunday I didn't leave until he was asleep, but I cannot do that all the time, either. 

But I got good reports yesterday...and I am hoping that the change of medications will help him see that I come back.  Sadly, unlike a toddler who learns that mommy comes back, Dimentia means the sense of time is GONE...I blamed myself for that...I didn't come enough, maybe I came too much!  

So I have decided I go when I have a need to see them...and I try to tell them that I will come back, but realizing their ability to process time  is GONE. 

I try to be grateful for small things...like my mom (who has lost vision due to macular degeneration) saw my bright green shirt and said it was pretty the other day!  

And I was able to take them walking outside separately and spend time with them...BUT I no longer have the responsibility of caring for them 24/7 in my home which was becoming completely unmanageable, even with extra caregivers.  

So it is a one day at a time disease...and an understanding that the end of life is painful..whether it is physical pain or Dimentia decline.  

I am thankful for this site...sometimes it is practical advice that can be shared...other times it is just knowing that others are walking a similar path.  

Thanks for the venting and sharing space.