I’m a mess

Ladyhoeft

Talk about depression. How does everyone cope with caring for a parent who is declining so quickly due to this disease? Any help or ideas would be awesome or resources

harshedbuzz

Therapy can be helpful. My mom saw a psychiatrist and therapist for medication and talk therapy. I get a lot of help here; we both benefited from an IRL support group's monthly meeting. I also had a dear friend living this nightmare with her mom and we met every few weeks for lunch and conversation with someone who "got it".

HB

sbp5989

You are not alone. There are numerous books if have the time such as the '36 hour day', etc. but I don't think they helped me a lot. This disease is so wicked and so different for everyone it is hard but yes there are tips and tricks in some of them and laughter they keep pointing to as the best medicine. But when you are in the throes of it it is hard to laugh. Think of it as everyone is in an 'Alzheimer's storm' but each ship and path is different - but it is a storm.

My county has support groups for caregivers and that has helped me to a certain extent so may try that angle. There are groups that meet once or twice a month to share current experiences and pass along what may or may not work.

Find any friends who 'get it'. If they themselves do NOT have a parent with Alzheimers, usually the support is for a limited amount of time. The person you can vent to is someone going through it. I have a friend and it is her significant other vs. me it is my parent. We can send ranting texts and we both understand. Then there was a relative who said to me "I've been through it so you essentially get no empathy from me." - That's tough but you move on.

I can't say I've found a true listener besides my husband but at times we just don't want to talk about it anymore. It is beyond hard and challenging. I cry a lot....

jfkoc

I think understanding your depression is the first step. The next step I think is understanding that you are grieving the loss of your parent.

To those you can add the stress you can feel and the lack of good sleep and escape from the responsibility.

We understand and we care about you and your parent. There is always a shoulder here to lean on......

-J

vanlinks99

Going thru same rough seas with my mom. The lousy part it will bring your drained emotions to workplace. I used to be very patient with these days I have none.

Anonymousjpl123

It is so hard. I’m relatively high functioning but even before this sh$t show it took a lot of therapy, exercise and support to be that way. When I became my moms caretaker I doubled down.

Please never be ashamed to seek out help for yourself. I felt selfish doing it but it has saved me and my mom. I don’t resent and loathe every minute with her, or feel like I’ve given up my life. I went through some moments I was really scared that would happen.

this forum is a godsend for venting. I would also suggest finding a few friends you trust and telling them what’s really going on, how this is. Don’t try to go it alone: there are supports out there for people like us. When in doubt call the alz hotline. Those people are amazing.

vanlinks99

Any one had encounter the alz patient increased mention of people dying during rampling of non sense or in her bubble world.

vanlinks99

Did any experience alz patient slides rapidly with mental state?

mommyandme (m&m)

vanlinks,

There’s a theory that as we get closer to our end we may think of those that passed before us and possibly see/speak to them, dementia or not. As far as mentally declining more quickly, that can be a thing too. Sometimes if there is a swift decline in cognition and/or mobility it could be due to a silent UTI. You might want to have your LO checked thoroughly for a UTI to rule that out as a reason for a sudden shift.

TrumpetSwan

How do you cope? For one thing, carve out time every day to do something that occupies your attention and focuses you on something other than this. I think it is startling how much of our mental energy is occupied by the needs of our loved one. Even if we are not physically with them, our minds can tend to still be mulling over plans for them and ruminating about how diminished they have become. It can really, really suck the life out of you.

Any activity that interrupts the ruminating thoughts, even for a brief time like a half hour or so, can calm down your nervous system. Breathe. Quiet your mind. Walk around a local mall, walk outside each day, listen to some of your favorite songs, engage in a hobby such as painting or stamp collecting or whatever interests you. The point is, just do something that mentally and physically takes you somewhere else. (Don't worry about getting too far out, you'll get back.)

Just Jenny

I understand just how you feel I am a full-time caregiver for my 74-year-old mother who has advanced Alzheimer's It is tough watching her decline I have reached out to my husband, and he has helped me with my sadness also I stay consistent in prayer.

Warm hugs

solerdr

Good morning Ladyhoeft.

I am sorry that you are having to experience this in your life's journey.

I understand and get it.

Alzheimer's is the "long good-bye" as we see our parents dying before our very eyes and it is a lengthy process as there are going to be a series of good-byes we experience.

-We say good-bye to the person we knew.

-We say good-bye to the conversations and activities we once shared with them throughout our lives.

-We say good-bye if and when they have to be moved to a facility that provides them with 24-hour care.

In essence, we experience the stages of grief, over and over again.

Without knowing your situation exactly, I can only tell you how I coped with my father's battle with this disease. Please keep in mind, I am not a trained professional, nor a psychiatrist; rather, I am simply a being having a human experience.

My father had Alzheimer's from 2000-2023.

He was a brilliant man, who had a PhD in Spanish Linguistics. He was my father, my mentor, my friend and my hero.

To cope with his disease, I focused on the fact that I was blessed to have a loving father, who spent time with me. I got to share my life with him for 54 years. Many people in this world do not have a father, and if they do, many of those fathers are not good ones, so I thought of how blessed I was.

I focused on ALL of the good and wonderful memories I had with my dad and tried not to focus on the bad stuff that we were experiencing with his disease.

Additionally, I focused on the fact that I was blessed to be able to care for my dad and help him through this part of his life.

Our brains are a powerful tool and if we focus on the negative and the bad, we will feel negative and bad; however, if we focus on the positive and good, that will help us move out of the darkness.

I had my good days, and bad days. I cried, yet I also laughed.

Although we say good-bye, and things disappear, the memories we have will ALWAYS remain.

I send you positive thoughts and prayers.

May God's light guide your day, and His spirit fill your heart with peace.

labshire40

https://alzconnected.org/discussion/comment/172230#Comment_172230

I cry a lot, too.

Mimi..W

I am a mess too. Big hugs. I wish I could provide you some good advice but I'm trying to figure out each day and visit. Depression is real. Most days are a struggle but then you have those special days that propel you forwarded until you need it. When we moved my mom to an AL facility, she asked us about her home and wanted to go back. I told her she did so well at saving that she is now living in her "Summer Home" (adjusted to the season). That seemed to make her happy for a bit. I just wish I could figure out how to redirect her when she is being verbally abusive. I have been seeing a counselor but that doesn't seem to help. I thought she had specialized with working with caregivers, but I don't think so. Highly recommend that that is a focus/primary expertise. If you need to chat or someone present, I will try to keep looking for new posts.

Hugs and try to have an amazing day.

lisavet

Hello. I am new here and I feel the same way. I cry almost daily for my father. There is no wrong in doing that. There is no hope for a miracle either so I just cry and try to keep memories alive. Its not fair but I visit frequently and try to give my father happiness for those brief hours.

solerdr

lisavet,

That is all we can do.

We can also be thankful that we had a loving father in our lives when many others did not nor do not.

One of the only silver-linings of this disease as that our loved ones have no idea they have this disease and are truly living in the moment.

May God's light guide your day and His spirit bring you peace.

Damion

Mimi..W

lisavet,

I wish I could cry. I have my moments but feel I have to hold it together for everyone. And what is private/alone time?

Question: How do you balance your time when one parent has Alzheimer the the other one doesn't? I try to give my Dad a break by engaging him in conversation but I also feel strongly in keeping my Mom engaged. My Mom can be very demanding of everyone's time.

Also, I have a funny from my visit yesterday. My Mom can't remember some of the basic stuff but she sure can notice and remember that I bought a new purse! lol I'll take the win for the day.

Mimi..W

I'm due an ugly cry any day now.

lisavet

I had a funny visit with my dad yesterday also. He had some off the wall moments but when I was leaving he got teary eyes so I held it together until I got in my car.

solerdr

lisavet,

Yes there will be some good and funny moments mixed in with some not so good.

One of the things we started doing when visiting my father was to visit him about 1/2 hour before a meal. The meal would serve as the distractor for my father as he liked to eat; thus, when lunch was served we would take him to the table, sit him down, and wait for the food to arrive.

Once the food arrived, it made it easier for me to leave. I would tell my dad that I was going to the restroom and would be back in a second (therapeutic lie). This would alleviate his and my sadness.

Hope this helps.

Damion

solerdr

lisavet

Solerdr

I can not leave him. He wants to walk me to the main door then i hug him and he cries. Its a never ending circle. It is so hard to leave him knowing he has nothing good to look forward to and the care he gets is just awful because he gets bad sundowners come around 5 oclock that he annoys the nurses and they have zero patience or compassion. Its a heartbreaking situation and there are zero good days anymore. There used to be but not anymore. I just feel lost

Mimi..W

lisavet,

I'm sooo sorry you are having to go through that. I don't know if it will help but just a suggestion. Can you buy a lamp for sundowners and place it in his room next to where he sits mostly? I bought one for when I lived in FRA because they have really long winters and little sun. You can attach a timer for it to go off at sunset so your Dad doesn't have to remember to turn it on/off.

solerdr

lisavet,

I understand. Unfortunately, this disease is a cruel one.

If the people whom you have entrusted your father's care are not being patient, and not caring for your father the way you believe he should be cared for you can always meet with the Director of the facility and let them know your concerns.

We did this at my father's memory care facility and they listened to us and actually brought in a consultant to help train staff. Believe it or not, the training to become a memory care facility workers are not stringent and it takes a special kind of person to work in a memory care facility. They need compassion and patience, which are both soft skills that not a lot of folks have and unfortunately they cannot be trained.

You are now your father's advocate, which I know you know; thus, voice your concerns to the Director and the Nurse who is in charge of the staff.

My father was the same; he wanted to walk with us to the main door; which is the reason we started visiting him 1/2 hour before a meal time, typically lunch. This allowed us time to visit with him, escort him to the dining area, and then to wait until the food was served and he was eating, which distracted him a bit. At the time he was eating I would tell him that I was going to the restroom and then I'd slide out.

I hope this helps.

Damion

lisavet

Mimi that is a good suggestion that is worth a try. But his sundowners is pretty intense. Come 5 oclock it kicks in and you have to know how to handle him. But I am going to try.

lisavet

Solerdr

yes it is cruel. Unfortunately when my father's sundowners hits toppled with his dementia he is intense and the staff seems to not handle him properly. They seem to want to be in his face and reactive and that is not the way to handle him. It’s frustrating when these employees do not know how to handle different levels of this disease. It just rouse my father up more.

Mimi..W

I hope my suggestion helps. Either way we hear you.

lisavet

Mimi. Thank you so much

Lotte82

I'm a mess too and it makes me feel like a failure and feeble for taking it so hard. It does help to focus on the fact that I have been lucky. Until now (at 41) I have had two healthy parents who have stayed together and been very happy, which has not been the case for most of my dear friends. However, it is still so hard and heart breaking sometimes.

My mum was diagnosed two years ago and already doesn't know who I am, can't make herself any food or drink, has difficulty finding anything in the house, getting dressed etc and has periods, when she is tired, of total confusion, sadness and fear. It's heart breaking! I felt awful this morning, but today I have found this chat and reading all your messages has made me feel slightly better. Not that I want other people to suffer, but that other people are finding it hard. It is really hard.

One of my big worries is that I am a drain, when I am feeling particularly low, on my husband and that my daughter (6 yrs) can tell when I am depressed. I hate that I am less patient with her, for example, when I am feeling particularly low.

lisavet

Lotte82. Sorry for what you are going through. I understand all of it. And I have been not so easy to live with lately either. I need to correct myself and improve in that area.

solerdr

Good morning folks.

Please, cut yourselves some slack. You are experiencing a myriad of emotions all at once, not to mention, that you are also giving every ounce of your personal energy to helping your loved ones. Thus, it is quite normal to feel all that you are feeling, it means you are human.

I am not trying to diminish anything you all are feeling; rather, I am asking you to be kind to yourself. It is hard, it is really hard to see our loved ones leave right and lose who they are right before our very eyes. However, please know that you are repaying your loved ones back with your care for them for all the years they cared for you.

Watching our loved ones go through this is much like the grieving process when we lose someone; however, this process is a lot longer; hence, the grieving process is a lot longer as well. Please know that eventually you will get to acceptance.

What helped me get to acceptance faster was focusing on all the good memories of my father, all the smiles, laughs, and practicing gratitude, much as you stated Lotte for what we focus on till dictate our feelings. Again, not trying to minimize anything; rather, trying to help. As Tony Robbins said "What we focus on determines how we feel. And how we feel - our state of mind - powerfully influences our actions and interactions."

The other thing that helped me was learning that I had to take care of myself first in order to be able to take care of others which for me meant ensuring that I was eating, exercising, reading (which I love to do), and engaging in the hobbies I enjoy. I know this may seem selfish; however, the definition of selfishness is pursing our own interests and meeting our own needs at the expense of others, which is not the case in taking care of one self first. Here is another way to look at it; when on a plane and the oxygen masks deploy, whom do they tell us to mask first? Us, so that we can then help others.

I hope this helps.

May God guide your day and His spirit bring you peace.