The Caregiver & Dysfunctional Families: How are you doing?

Yoda,

As always, I wish you all the best. Please update us at your convenience. Thinking of you and hoping that you will find answers to your struggles.

Gersun and Golden,

Last week, I saw my PC doctor and my new PT.
 
My doctor is concerned about the amount of clutter in my house and the stress that it is causing me. I’m having some pain, which sometimes is terrible, in the upper part of my thighs on each side, plus where my legs and torso fit together. To make sure that I didn’t have any structural damage, my doctor ordered me an x-ray that day. I have not heard back from them.
 
Earlier, my doctor ordered a CAT scan of my brain to make sure that I have not had any mini-strokes, as that might explain some of my balance problems. She did refer me to a PT for help in that area.
 
Although I saw my PT to evaluate my balance problem on Wednesday and started the treatment exercises on the same day, I was not up to doing them on Thursday or Friday. I tried Thursday night but had to force myself to do what I did, but did not complete it. I'm still not sleeping here like I did at my sister-in-law's. I hope that today is better.
 
I told my doctor I slept much better at my sister-in-law’s place than at home. She thinks it is because I feel less stressed there. The critical difference is the two locations here, and my sister-in-law's duplex is not cluttered. I will have to hire some young men to come and move the containers of clutter up in the loft because I am no longer up to that.
 
The analysis of my balance problems is that I'm ok as long as I do not have to stand or walk with my feet close together; my ankles need to be stronger, as do my legs. When I tried the balance test of walking with one foot directly in front of the other, I flunked. My wife is having balance problems also, but she has not started with a PT yet. She is waiting for her PC doctor to get the referral completed.
 
My sleep problems are so bad that I’m not able to get much done plus I don’t do what I do at the same level as before. For example, I’m usually very prepared when I send documents for him to prepare our taxes. This time, I sent him copies of the same thing and some outdated items he did not need. I usually have my income spreadsheet ready to send him, but not this time.
 
The only thing is that I believe my wife's twin sister must be the one to tell her about these ideas instead of me telling my wife that her sister and I discussed this which she thought of in light of our ages and health challenges.
 
We will revisit her in another week. I have emailed my sister-in-law that she must bring this up when we are up there visiting. When we left, my wife told me that her sister had invited her to live in the adjoining duplex for free, but not right now. In talking with her sister, I was glad to hear that she does not want to do anything significant like that now because it has not even been a year since her husband died. During our phone conversation, my sister-in-law mentioned that a continuous care senior community might be better for us, given our ages and health challenges, which will not get any better. I’ve researched such places with independent living, assisted living and nursing home care.
 
With my wife's mild cognitive decline, discussions like her sister and I need to have will be difficult for her. The main thing that I believe will help is my wife’s desire to spend as much time as possible with her sister.
 
About all that I can focus on right now is my narcolepsy test planned for the last of March. I’m exhausted and not up to moving. Whenever we do move, we will need to pay people to help us prepare to remove the stuff that we can’t take as we move to wherever we go. Two years ago, I entered a new educational experience. I have had to stop, and the school has given me an academic sabbatical.
 
I woke up very early this am which is typical as I don’t usually sleep for a whole night at one time. Soon, I will go back to bed. I need several more hours of sleep. I hope that I can do my PT exercises. I will see my PT three times next week.

Yoda, thx for the update. Sounds like you have a lot on your plate to figure out. But it sounds like you are doing so in a methodical and sensible way. Doing your research is a good idea. Seeing what's out there and taking your time is smart.

Golden, thx for the hugs. Yes, I did take on too much emotionally at a young age. My mom always told me that I was her life line and I guess I took that to heart and couldn't let that go in a way that would have served me better. I have no regrets about being there for my mom when she needed me. My problem is now I'm sort of left without a purpose even 8.5 years after her death.

I don't even feel like I have a family. We all sort of splintered when mom died. I predicted this would happen. I miss having a family unit but I don't miss them cause I always feel judged when I'm around them. Having said that I judge them too. If we could all just accept one another maybe we could be close but I don't foresee that ever happening. I pray about it.

Golden,

Thanks. The only thing is that I believe my wife's twin sister must be the one to tell her about these ideas instead of me telling my wife that her sister and I discussed this which she thought of in light of our ages and health challenges.

We will visit her again in another week.

FB - it takes two to argue. If you don't take his bait there is no argument. You don't have to defend yourself, or justify your actions or decisions to anyone. Set your boundaries. He won't like them That's ok. They don't have to be discussed. Let him talk and when you have had enough just leave or hang up. Another response is "I can see you are upset, Dad. I'm going to go now and I'll see you (or talk to you) later when you are feeling better.

Gershun ((((hugs))) That must have been very hard on your family for your dad to die so young. Apparently kids do think it is their fault and take on too much responsibility. As you know now you are not responsible for anyone else's happiness.Just your own. You became the family "helper".at cost to yourself. Yes, your mother probably did hang onto you too much. All parents are fallible. I think it may be a good thing that the feelings are finally coming out, if you can work your way through them. I have found that talk therapy with a supportive counselor helps me. I am glad you are sharing with us. Some things take a long time to surface. Praying for you to heal from all the negative/toxic family BTW I have found that Oil of Oregano (not oregano oil) capsules are sedating. Sometimes that helps. I can only take one a day or I sleep too much. Apparently they oil of oregano may increase dopamine and serotonin.

Nice analogue, Beatty - better the devil you know...

yoda - sensible to be looking into facilities especially with your wife's MCI.

shelly - welcome - not a terrible person at all, but a wise one. As a caregiver you have to put on your oxygen first, so to speak. Don't let your sibs pressure you into more than you can handle. it sounds bad enough that you don't have a life. Can you take some time for yourself in your daily routine? I'm sorry you gave up your job to look after your dad. Who will look after you when you get older?

I care for my 72 yr old father with vascular dementia. It's hard to whine or complain when I can only imagine how lost and confused he is ! Unfortunately he had a fall and is currently in the hospital. My dysfunctional siblings are "encouraging " me to be at the hospital 24/7 just as I was at home. But I'm taking the time for myself to actually rest and take advantage of the respite of his absence. Does this make me a terrible person?

Gershen,

Hi! Here's my update.

I've been having balance problems and falling for some time now. My sleep has been around 5 hours a night according to my smart watch if it is trustworthy, My good news is that I have lost weight. I'm down now to 232.

When visiting where her identical twin sister lives last week to celebrate their birthday, I noticed that I slept better. I mentioned this to my primary care doctor and she said that I am psychologically stressed by all of the clutter in our house plus please tell my wife to get this clutter out.

I would say that 98% of it is hers. I have to turn sideways to walk down the hall because my stance and hips plus shoulders are wider than hers. The den, living area and dining area are all cluttered. Plus, her spending on eBay and Temu has been over $4,000 for the last month.

As I told my primary care doctor, Her twin's duplex is not cluttered and she replied, so up there is less stressful. Yes! Her eBay credit card has my name on it as an authorized user and Experian informed me that her using 47% of her allowed amount on the credit card has hurt my credit scorer. When I got downstairs from the man cave, I calmly told her that her eBay credit card was hurting my credit report and I wanted off of it. She agreed. I made the phone call and they asked her to confirm everything.

On our way home on Sunday my wife expressed interest in our moving into the empty duplex right next to my wife's twin. I said that I did not see a need for it right now, but it was something to think about.

My sister-in-law had a lengthy, heart-to-heart discussion on the phone as we often do before I visit, little times during a visit and after a visit. I liked her reflection about all of us getting older with various health challenges. She said that she could not deal with us moving right now because it had not even been a year since her husband died.

Her further thiking about all of us aging and our health challenges led her to ask me to research retirement places in our state that over three levels of retirement. 1. Independent Living. 2. Assisted Living. 3. Nursing home care. That is a great idea. I've reseatched this already minus places in the mountains and on the coast. I sent the names of the cities where they are and the links to each one of them.

Today, our youngest son reminded my that my wife does have mild cognitive impairment and most likely should not be involved in the research process because it would be too confusing. He suggested that my sister-in-law and I dig deeper into this, find about three that we like, and tell my wife all about this plus why we picked these three places. Then, we will ask her for input on which one to chose. Our youngest son will help with the research a bit more behind the scenes and I'm going to send him the same list that I sent my sister-in-law.

I guess that you can tell that my sister-in-law and I are more like siblings since having known her for over 36 years plus the ordeals that I have helped her work through like her battle with cancer, her retirement, plus almost making some bad financial decisions while preparing to retire. I'm sorry to have to say this but her husband, for various reasons, was such that she was more of a caregiver for him all of these years.

I saw my PT for him to evaluate my balance and he created a program for me to use various videos from his office connected to my smartphone and do them twice a day for 15 minutes. It's time for my second 15 minutes of the day.

Like me, she is concerned about her sister's huge obesity and how slack she is taking this whole weight loss thing.

Another good news to report is that my diabetes continues to stay well under control.

In light of our health issues and her sister saying that she does not like travelling over the holidays, we have cancelled our Christmas week trip. I am particularly not up to travelling with this sleep problem and frankly, I'm living from one day to the next.

Nice one Beatty!

Sometimes I catch a glimpse of the little black dog that started following me so many years ago.

Sometimes the sun is shining bright, I am happy, busy, heading forwards. I don't look behind me in my shadow. I forget.. but he lurks.

Sometimes it is gloomy. I slow down, lose my path for a while. Feel the close presence. Yes little dog, I know you are there.

Every now & then I have to stop & rest. Lay down. Accept the company of the little dog. By staying still some small cracks start to heal. When ready, up I go, changed.

Like an old broken but glued together vase. A bit messy looking, but the glue is even stronger.

These are my crazy thoughts.
Maybe I'd rather that little dog I know well, then something worse.
😜🏺🐾

Gershun,

Anxiety and depression are horrible to deal with. Wishing you peace. Please know that your mom would want you to be at peace.

I am happy that your faith brings you comfort.

FB,

My caregiver days have ended. Mom died in 2021. I cared for her for over a decade so trust me I know that this is very difficult.

I hope you will be able to sort this out with your dad soon before it completely destroys your life.

Need, Ali & Golden thank-you.

You know I always thought my mom's happiness was my responsibility from the age of 4 and onward. You see my dad died when I was 4 and for whatever reason I always felt it was my fault. He died of cancer by the way so where I got that idea God only knows. So I made it my purpose in life to do whatever I could to make mom happy. Keeping in mind nobody is happy all of the time. But when she wasn't happy I knocked myself out trying to figure out how to make her so.

No offense to her, but I think she enabled this. I don't fault her for it but she probably should have let me grow in my own direction away from her. I remember being by her bedside her last week of life saying to my sister "I helped mom get through my brother's death.......who is going to help me get through hers"

I think now almost 9 years after her death I've realized that she was my purpose for living. Maybe that's why I'm experiencing depression and anxiety. My mind isn't letting me block out the feelings anymore. They are all rushing in.

The anxiety I have been experiencing has been debilitating. I feel frozen in fear sometimes. But I hold on to my faith and it sustains me. Perhaps once I let go and remember God is in control I'll do better. I hope so.

@NeedHelpWithMom,

Our situations definately sound similar. I do feel like a shell of a person lately. I do not understand why a parent would want their child or children to put their lives on hold for them. I have lived in fear of my father since I was child and that is what has caused me to believe I was supposed to do whatever he said. I'm also in counseling but this is hard. Whenever I take up for myself with him, it starts an argument and he accuses me of mistreating him. I know things must change before I end up sick. I had an anxiety attack recently after an argument with him. We do often feel as if we are responsible for them. I think this is because of the way we were treated. He needs more help than I can give. I'm rooting for you too! :)

Fairhfullbeauty,

Don’t do Dad’s laundry , cooking , cleaning , shopping etc .

Do NOTHING for him . You are propping him up . He burns his bridges, not your problem . Step back . When he’s in bad enough shape call APS.

FB, stop today. Repeat after me "Dad. I am not your laundry maid".
Practice. Look him in the eye. Say it.

I had TWO family members that refused to wear pullups when they started to need them.

No adaquate clothing - no rides in my car. My car is not your toilet.

Don't anyone tell me Oh you'll be proud one day too.. No. When incontinent after childbirth I wore the biggest sized pads to be found - I called them surf boards! When UTIs strike, I head straight to the incontinence isle in my local supermarket. I have worn elastic waisted clothing for speed for years!!

Dad needs to wash his own clothes & then HE can decide whether to save himself some work. Or not.

I would guess his size, buy the pullups, leave them in his bedroom. And never discuss again.

Ok. Rant over.

gershun ((((((hugs))))) and prayers I never went for cognitive therapy so have no idea if it would have worked for me. There are other types of therapy. God so wants you healed.

FB - boundaries, boundaries, boundaries!!! Let him deal with his own sh#t in every sense! Limit contact and only do what is comfortable for you.

I once went to a psychologist who after one session pronounced that I did everything for my kids like their laundry. Can't remember what else. She was so off the mark. My kids had chores. As soon as they were tall enough to manage the dials they did their own laundry. They did kitchen duty and so on. I considered it a waste of money and never went back. Alva, I am surprised that your dd is considering going back.

Ali I have found it helps to figure my family out .Both in terms of relating to them and in figuring myself out.

@ BarbBrooklyn,
You are so right!!!!!

FB,

I feel your pain.

Oh my word, I gave until it hurt and trust me, I deeply regret it.

I was blind as a bat. I had so much empathy for my mother that I placed myself last for far too long.

I bought into all of the lies that people told me. Others told me that I would regret it if I didn’t care for my mother myself.

I landed in therapy because I was severely depressed and anxiety ridden. I am grateful that I had a therapist who helped me sort out my emotions.

Barb is correct in saying that I was fearful of my mother’s reactions.
Honestly, I think I was crippled by my fear.

I felt responsible for everything and I couldn’t bear to look at what would happen if I wasn’t there to help.

I also became very complacent. I was a shell of the person who I once was.

I was going through the same motions day after day, and absolutely miserable. This isn’t living life. It’s not even helping our family member to the best of our ability.

When they need more help than we can give, it’s time to let go of the responsibility and reach out for help.

I’m pulling for you. It isn’t easy to admit that things must change. When you do, it is a huge relief!

Please don’t remain in your current situation. It will only become worse.

Alva, I can't believe the nerve of a cognitive psych to give a client's family a diagnosis of ASD, sight unseen, and during the first session! That is bananas. That psych is a mystic seer, for sure! 😄

The psych is practicing very far outside their scope of competence. Funny as heck! Also, UNETHICAL. I'd say that anyone capable of giving that kind of blanket advice in a first-session-bomb-drop isn't going to be very helpful in sorting out DD's nuanced struggles.

I've come to suspect some ASD in my family, and the three I suspect are all unable to live in the world without degrees of help from others, and that's always been true. There are clear lifelong issues and differences in their capabilities, beginning in early childhood. Even then, I wonder if they would ever be officially dx'd ASD even if they did seek out the right team of specialists to assess them. But the numbers of ASD are rising, as much as 1:44 by some estimates.

Gersh, keep stepping. Keep it up, whatever it is that gives you a healthy brain boost. Meditation is difficult (for me), but like anything else, it gets easier with practice. 💙

Alva,

Wow! Unreal, huh? “Unpacking Autism.” Now, that is a stretch!!!

Gershun,

It is amazing that you had such insight at such a young age. I certainly didn’t have the insight that you did.

I needed therapy in order to gain an objective perspective on my situation.

Due to various reasons, I had so many confusing thoughts when I was growing up. I wasn’t able to sort out my feelings very easily.

Therapy helped me to understand myself and others. I had a phenomenal therapist who pointed out things to me that I wasn’t able to understand at the time.

I am glad that you are benefiting from meditation.

It is important find time to spend alone without any outside distractions .

I've been to therapists. When I was a teenager my home life was a fright due to my brother who was schizophrenic and violent and then my school life not much better where I was getting bullied. I became anorexic and mom thought talking to someone would help. The first time I went the doc asked me why I thought I was feeling bad and what was triggering stuff. I have always had pretty good insight and when I got through explaining he said "wow, who told you all that?" I said "Nobody, I just know this"

I guess the point I'm making is anytime I've pursued cognitive therapy etc. I'm not really learning anything new about myself cause I already know it. In other words "know thyself" isn't helping with anxiety/depression.

Ali, you make good points. I did start going to meditation classes two weeks ago. The first time I actually did get into a meditative state. I was sceptical going in but I told myself to be open minded about it and voila! The second week wasn't as great but I'm going to try to stick to it.

I am trying to feel God's love inside of me to. I have been struggling with self-hatred lately a lot. But I do believe in God. Very strongly. I know he doesn't want me to feel this way. So, I do try to go to that God place when I meditate.

Alva, good Lord! WTF?

FB, why on earth are you doing your father's laundry?

Have you ever heard of "natural consequences"? Let them occur.

FB, have we ever told you what NeedsHelpWithMom's therapist told her? Need said "oh, I have to keep up all this caregiving. Otherwise my mother will be upset."

The therapist said "So? So what? She gets upset. That's not YOUR problem."

FB, your dad not wearing pullups is not YOUR problem. Stop "owning" his bad decisions.

Got a funny one for you regarding psychologists, shrinking in general, and the labels we have for everything and everyONE, along with a pill to pop for current circumstances.

DD decides to see a psychologist. Cognitive therapist. Just "dealing with stuff", you know? Cutting the natal cord with son moving toward 25, ; Mom (me) with new cancer thingy going, issues at home, difficulty with physical issues making her tough work with little ones in school more difficult by the day to say nothing of the current school systems and how they work. Issues like whether best to retire early now at 62 or try to keep on keeping on.
And other stuff. You know. LIFE stuff. Kind of a check in check up and what might help with working through some of this.

So she goes to first appointment.
And comes away with what?
This woman (cognitive therapist) says that my entire family is autistic.

She says that in response to this she herself laughed and said "Really" and didn't know quite else what she should say (I would have said "you're a WONDER! Diagnosing about six other people without ever seeing them once).
And the woman sat back and said "Oh! You think I am kidding!?! Then you should read the book "Unpacking Autism".
I laughed so hard. I told her she should have said "well on top of THAT diagnosis my Mom also has an anxiety disorder and is a bit OCD, but not much I can do about THAT". HEEEEE!

Oh my god. Talk about reasons just to try to get on with it, and stop expecting happy-all-the-time. She is kind of trying now to decide between just not going back to this shrink, and continuing to "shop around", or going back kind of for the fun of it.

I myself think about "seeing someone" just for this particular round of "a spot of bother" but then think and think of the three times I had therapy (not that each didn't help and didn't contribute) and think I know all the tricks and could likely DO the therapists role, so why bother. Whether is is depression or anxiety or uncertainty of any things else I no longer think that the pills that are so common in our society are improving us much, or that the deep breathing does much more than just improve our O2 sat.
Guess I am just getting old and figure "Bad weather front incoming. Batten down the hatches" and get through the current storm, hope for sunnier weather on the other side.

@BarbBrooklyn,
His issue is going to be that he might be burning his bridges with people who actually wanted to help him. I told the physical therapist and the discharge people that I would not be moving with him or him with me. He knew this as well but I think he thought I would be forced into it but I will not be. After all that has occurred, he still does not treat me right. He purposely will not wear his pull ups. He says he does not want to wear them. Instead he just uses the bathroom on himself sometimes because he says he does not feel like getting up. I'm the one who has been washing his clothes and it is very unpleasant.

FB, you say you and another person are "trying to help". You seem to think that there is binary choice between being in thrall to your dad and walking away.

How about figuring out what you can and are willing to do? Like, taking him dinner once a week and taking him to one doc appointment a month?

Anything else requested gets the response "I can't do that. You'll have to make other arrangements."

Your dad is ONLY at home because he made an arrangement with a friend to stay with him. His stubborn and abusive behavior ran that person off. Discharge assessed as needing full time care. You cannot and should not be his full-time career, because you have to work and because he's abusive.

His needs do not trump yours.

Not doing well at all! To make a long story short, my dad is back at home after being in therapy for a few months at the swing bed in the hospital and then at the care center. We found someone ( a friend of his) to stay with him but because of his attitude, the friend left after a week! So now, he only has me and another person trying to help. I know I could walk away because of the emotional abuse I endured from him ( and still do) during my childhood, but my heart will not let me but it is wearing me down. Something is going to have to be done. He needs the help, but he could actually do better if he put forth effort.

Gersh, I sympathize. When your quality of life is suffering this long, please find your fight within you. I don't know what will help you, but something will. Long covid and situational depression/anxiety; maybe you're experiencing one or both. Maybe your body/brain needs deeper nutrition or outside stimulus (i.e., doing something different and challenging).

Psychiatrists are not ideal helpers here, as discussed, but that is always an avenue to try. I think trying something is better than trying nothing because we affirm that 1) we need treatment, and 2) we are worthy of treatment. So it's a kind of affirmation of ourselves, imo, just by seeking care.

Whatever it takes to signal to your brain that you deserve better. Find that thing, anything; go do it. Intense self-care is an option, too. Spoil yourself silly for a week..? But really overdo it. lol

Can you do something different to get out of the rut? Will your hubs divorce you if you take a 3-day road trip by yourself to somewhere interesting and beautiful so you can gain some inspiration from nature? lol

I'd tell you what I tell myself: find your fight. I know it's so hard, but what are the options? If you don't like how you're feeling, and it's changed you into someone you don't identify with, then I feel like we have to do something different. Maybe that would be researching wellness supplements that you think could boost how you're feeling and starting a regimen of them. Maybe it would be scheduling a half-mile walk every day and sticking to the schedule no matter what.

Idk what would help or what you already do or don't do, but change up your behavior so you can change your mind.

I found this Ted Talk interesting. https://www.ted.com/talks/amy_cuddy_your_body_language_may_shape_who_you_are?language=en

According to the compassionate and smart sociologist Ms. Cuddy, all one has to do to increase testosterone (which we all have, male or female) to feel more powerful and decrease cortisol to reduce stress reaction is to raise your arms above your head and lift your chin up for two minutes.

I've been doing this randomly while walking around the past few days since I watched this. I feel crazy. lol I also feel like I have nothing to lose here. 💖

Yoda, I totally get what you said about not having much to say anymore. I've been suffering from depression/anxiety for over a year now. I think it all started with my foot problems, then getting covid seemed to exasperate it all.

My personality has changed. I've lost my spark. It occasionally peeks through but I really just haven't been myself for a while now.

Ali, I get what you said about Dr's and how they misdiagnose, prescribe something which may or may not be what the patient needs. Then the weaning off process, starting another med which may or not be what you need etc. It can be a vicious cycle and the patient suffers for it.

I still come on here and read posts but seldom post anymore. But I still pray for you all every night.

continued

Re anxiety - dd and dgd both have that. Talking things through helps as well as ADHD meds. Anxiety is a big thing with CFS/FM. I feel my anxiety is often "physically/neurologically" based. Talking things through does help there too and also taking things that lower brain inflammation and balance GABA/glutamate.

I had a session of anxiety a few weeks back, for no particular reason I could identify, so I tried 600 gm GABA as I know in CFS/FM sufferers the GABA/glutamate balance is off. By 1/2 to 1 hour my brain was back to normal. What a relief. That is now part of my "tool kit". I do use 100-200 mg GABA at night fairly often to help me settle down to sleep.

Well, my somewhat foggy brain is running out of steam. This hasn't been my best day.

Hope what I have written makes sense.

Share all you want, Ali, if doing so helps you. (((((((hugs))))))