The Caregiver & Dysfunctional Families: How are you doing?

27 years with no vacation. Am at the end now and though was hard I’m glad I did it. Knackered now though! Still can’t sleep more than 3 hrs at a time as got too used to either work or care meaning I had to get up.

Havent been here in a while. Sent Dad to my siblings for a few weeks. He wasn't happy going although he gets to see his grand kids and great grand kids (one for the first time). I paid for the air ticket. Checked on him, all I got from the sibling was he is OK. Again no communication from siblings. He wasn't happy with no car there.
My wife said after the first week of just us at home that I was very relaxed. Very true, I have been enjoying my quiet time and we were able to go on vacation with no worries about the house. We have enjoyed having out house back, no smell and no cleaning the bathroom every time we want to use it.
He is due back this week. Oh well, at least I got a few weeks.
Now he wants to have his knee done. The last time it was 3 months of hell for me being the nursemaid. I tool him this time he is on his own, I am not making him meals at the rehab facility when he doesn't like the food. Last time I was there every day. This time I will visit once a week, maybe.
In the meantime my BIL is in a NH 1800 miles away, had a bladder issue with te cath and ended up in ICU. With his stroke, lung and heart issues the Drs dont give him great prognosis. Now we are discussing with the doctors request putting him in hospic where he is. Just another issue on the list. Everyday while we were on vacation I had to deal with calls on the BIL.
Even when we get 3 weks to relax another issue pops up.

Just got off the phone with the NR about starting hospice for the BIL. Tricky as were are not there and have to do everything on the phone. Right now he will stay where he is but if he goes into hospice then he will not have his electric wheel chair that is getting fixed or replaced and other things will change. Medicare and Medicaid is covering all the costs for now.
He is right in between full care and hospice. Not sure how to play this out since we are 1800 miles away.
We can and have the authority to start hospice but not sure we want to do that right now. He are letting him make that decision at this time by letting the NH help him with that decision. He has been back at the NH since Friday and hasn't gotten out of bed yet. Weekend staff let him stay in bed and the nurse said today she let him stay but has to get out tomorrow. Part of the problem is him lying in bed.
He had a stroke 9 years ago full rt side paralysis, his lungs are shot due to smoking and other stuff, 20% heart output since the stroke and heart failure, and abdominal aneurysm and a DVT in his right arm and has a cath. Not in good shape. All the Drs advised hospice. We have him on a DNR since the stroke.
Tough making these decisions, we had to with the SIL with cancer so not much fun doing this again. Again here I am at my desk with a file drawer full of medical information and having to make all the decisions pretty much myself. My wife will help with the decision but pretty much leaves it up to me.
The nurses are great at the NH but not the skills like at the ICU and elementary. My fear is once in hospice he will go down fast.
All this is weighing very heavy on me right now. Dealt with the SIL with cancer and hospice, then moms stroke and passing then moving dad in and been dealing with this for 9 years.

I'm so sorry for all your troubles, TG. (((((Hugs)))))))).

Thank BarbBrooklyn, thought id be more clinical with this but is weighing heavy. On the outside I look at the medical aspects but on the inside it is more personal. Not that I have had much of a personal relationship with my BIL (only seen him a dozen times) but I have dealt with his medical care weekly for the past nine years. Not that he has known nor really cared that I am aware of. Someone has had to do it and I stepped up. I think I know more about him than he does.
When he had his stroke, we (wife and I) flew across the country multipule times to manage his care and property. Had to reestablish his imirgation status (born outside the US). Deal weekly with the NH and nurses and his medical care, funding etc. Its been a long road.

Youre a stand up guy, TG! ((((HUGS))))))

Long conversations with my wife last night about her brother. This is not easy to do making end of life decisions for someone. If you don’t believe in higher power and God and signs maybe read this.
 
I have always believed peoples spirit hangs around. When my sister in law was passing we had her in a hospice. The time was near but the nurse said she was not ready to go just yet. Close. It was dinner time, we had been there for 11 days all day every day. I was going to get some take out and the nurse said why not go out, if anything happens I'll call your cell. So we are getting ready to leave and I turn the TV to a music channel, my wife was in the bathroom and the lyrics are "don’t leave, I only have an hour to live", they were as clear as day, my wife heard it too, she never listens to lyrics. I asked my SIL, she was unconscious, "are you trying to tell us something?" We told the nurse, she laughed, "weird things happen around here". We quickly grabbed something to eat and got back to the center, as we were coming in the door we stopped to talk to the people in the room next to hers, the nurse walked by and came right back out, "I was in there a few minutes ago, she just passed"..... 1 hour after we heard the song..... Fast forward to a few nights later, my SIL when she was alive would always call at dinner time to talk with my wife, never failed. So for a few weeks every night at dinner time the phone would ring and no one was on the line. The caller ID was always 000-000-0000. We figured it was her giving us the OK. Lots of little signs happened for a while that we can’t explain.
 
So last night we are discussing if or not to OK my BIL to be in hospice care in the NH he is in. It is a tough decision that the Dr’s want to make or have us make. We called him and he is not with it at all and the nurses agree he is not well. So we are back and forth at dinner about this. The phone rings, I look at the caller ID, most always its been robo calls, DNC, RNC, NRA, Red Cross or some random name. "Good to Go" was the caller ID, I kid you not, I took a photo of it. I dialed the number back, "not in service"........ we were shocked... a sign from my SIL saying it’s OK to do this? I'm getting chills right not just thinking of it. We talk more and came to the conclusion its the right decision but I will confirm more with the Dr’s today. He is bed ridden, lots of issues, it is hard to make this decision being 1800 miles away.
 
So this morning my wife is getting ready for work, she is getting something out of the closet and said, "I guess this is good to go".... I stopped, "what did you just say?" She didn't even realize she said it, just normal talk....

With peoples passing we have seen lots of signs, from glare in photographs at my mothers house where glare bubble was not in the prior picture of the same, to certain random noises late at night that cannot be explained, to things popping up in places they were not before.

So today I will call and get more information, I have been dealing with this NH for 9 years and managing his care as much as you can from far away. This is difficult. And he is not even my brother. This sucks!

Golden,

Happy Belated Birthday! I hope it was a good one!

Sounds as if you're kitties are adapting to their new environment.

Big Hugs,
Much Love & Light!

Margeaux

Trying,

I am so sorry to hear what you've been experiencing with your parents.
This must be very hard on you. Having to have them bounce between hospitals and rehab is difficult on them also.

It does sound as if maybe you could talk to someone maybe a social worker, or hospice to see what they can advise you.

When my sister who was the main caregiver realized that placing mother or even having the doctors handle some of her issues towards the end of her life, wasn't serving mother, she really made a connection with hospice care. They can be very helpful when it comes to that time an elder just keeps getting weaker and weaker, and possibly going through that cycle between the hospital and rehab might not work for some elders anymore.

I will keep you in my thoughts Trying, I know this isn't an easy time for you!

Much Love & Light!

Margeaux

TG, signs and portents! (((((Hugs)))))))

TG- Oh yes. I had a very similar experience to what you described. When my oldest daughter was born, there were some complications, and she had to stay back in the hospital after I was released the following day after giving birth. As a new mother, going home without my baby was devastating for me. I couldn't sleep and was up thinking and worrying about my new born if she was going to pull through.

I had the TV on very late at night and there was an informercial for men hair club. A man was giving a testimony about the hair treatment and how it had 'saved his life.' I wasn't paying much attention but what he said last just jolted me as if it was a message for me. then I felt calm after that. I just knew my baby would be OK.

Days and weeks later, I tried catching that same informercial to see if the man actually said what I heard he said, but there was no testimony from any man saying the treatment saved his life.

I’m depressed. Both parents are 90. My mother is amazingly sharp tongued. She has pitted us 3 girls to benifit her needs. Constantly stirring the pot with favoritism. We are held emotionally hostage thru guilt and neediness approval. I’ve always been on the bottom of the pile being the youngest so I’m still treated as if I was 13. My sisters moved them near me. They live 2 hours away. I’ve never had a great relationship with them and never lived anywhere close to them. Now I’m expected to be on call. My father was physically abusive to me all the way up into my 40’s. I have many triggers being with him. We do not get along. My mother expects me to just move past everything and be with him alone on appts etc even tho I tell her I can’t. It’s all overwhelming. If I don’t do as she says I’m lambasted I front of anyone who’s around.

Root38,

Leave

Root38,

Ya'll are "emotionally hostage" because you allow yourselves to be. Ya'lls parents are not going to change. Stop dancing their emotional dance.

Root;

You tell your mom that you can no longer be "on call" for anything at all with regard to their care. You say "no". Who is it who has these "expectations"? They didn't check that with you, did they?

They will be angry. They will foment anger in your sisters.

If you don't want to do "care" then don't do it.

Your sisters moved your parents geographically close to you? Did you agree to be their caregiver? No? Then you have no obligation, do you?

If it helps, tell mom "don't talk to me like that" and leave the house immediately. If she doesn't have dementia, that might have an effect.

Read up on Fear, Obligation and Guilt.

Thanks for the comments, Talked to the nurse at the NH and she feels the BIL is NOT ready for hospice yet, They have him in therapy for now so maybe thatt will prolong the process. Waiting for the DR to call and get his opinion. Somewhat of a relief not having to make the decision right away.
On the other front Dad comes home tonight after 3 weeks with my sibling. Of course no calls from the sibling the whole time, I had to text her and one word response back. I did call Dad once. I guess I am supposed to read the airline app to see when he is coning back.
So much for my vacation, back in the frying pan.

(((((Hugs))))), TG.

Remember that dad won't change his behavior. Only you can make changes, and only tou your own behavior. Hard, I know.

Have you thought about getting him in for a cognitive assessment? Might give you some clarity on his needs.

We will see, will try to talk with my sibling who is in the medical field to see her assessment on him after him being with her for a few weeks. Most likely will say he is fine. WIll see how it goes. Mostly years of being hm and I cant change that. So I guess you are right I have to change. I am sure he will expect to be taken care of when he gets here... "not today!"......
Just another day......

Wow, so many having so many caregiving debacles. I lift each and every one of you up.

Today I went in to pain management doctor. Apparently their phone system was dropping messages. She gave me her cell phone number. The clinical staff person I spoke with a week ago did not speak with the doctor, so she knew nothing of the very bad drug reaction I had. Doc admitted to staff turnover for problems like I had. She has prescribed me five pills, lowest dose of OxyContin, and five of the lowest dose of Hydrocodone. She is in agreement with me, we need to figure out what I can safely take for pain when I have these joint replacement surgeries. Her instructions are to pick one, cut a pill in half, take with food, when I am in pain. Not at bedtime, make sure spouse is nearby. Next time I’m ready to take something for pain, try one half pill of the other one. She prescribed me a dose of Narcan to have here, so hubs can react if I have a bad reaction. I am to text her as to the results, which, if either, is tolerated, which seems to work better for me. She will be in touch with the surgeon as well, to make sure pain management is seamless for the total hip in September. Since I’m having cystoscopy Friday, she wants me to be comfortable. Have hubs drive me, have the Narcan with us, plus take one half of one pain pill prior to the procedure. My results will enable me to give her feedback as to whether one or the other provides pain relief, without making my heart rate go too low. This is an exercise in faith, but I can’t very well not have pain relief after waking up from a joint replacement. Especially when we do the knee replacements, as those are very painful surgeries.

Scary!

TG, just to be clear...

When I point put that it's you who has to change your behavior (because dad isn't going to change if everything remains the same), I don't mean that you need to become all tolerant. Far from it.

I mean that you need to have honest reactions to him (given that you say that his cognitive skills are intact)...

"Dad, you peed on the floor. Here's a cloth, please mop it up, use disinfectant and throw the towels in this bag".

(If he can't follow a 3 step directive, he's got a cog prob to report to the doc).

"No dad, I can't cover your bills; I'm broke myself."

(End of discussion. If he can't manage money, another cog issue to report to doc).

"No, dad, you can't have the car. It belongs to the wife. We both agree that it's a no-go".

Change your behavior.

It's not up to you to decipher if these issues are "can't" or "won't". And it's not up to your sister, either. You're in charge, TG. You are a caring, loving person.
And dad lives with YOU.

Either set these boundaries to regain your emotional health or, if it seems like dad can't handle these simple tasks, get him the mental health and cognitive assessment he needs.

I get it, I am supposed to change my way of thinking and doing. It is just hard. The house was so quiet and we had time to be husband and wife without listening ears.
Back to reality. He is off to his coffee with his friends. They pick him up. He tells me he was bored because he had no car at my siblings. So now he will be driving our child's car all around now that he is back. What am i supposed to do? He gave me his car when he moved in and I traded it for a newer one for me but yet the past 6 years I am the one paying for the house, food cable internet heat light and ac while he contributes zero. My wife says the truck was payment for living with us. He has no plan on how to get a new car because he has no money. So I am to provide him a car. Its like I am hostage in my own place. If I dont let him drive the car then we have to transport him everywhere. He knows it and I am screwed.
He didnt spend much while at my siblings so now I have to tell him this month he has to save his money becasue I am in a tight bind until the end of the year (welcome to commission based income). I am sure he is itching to spend like he normally does. It is like living with a child.
Zero help or communication from siblings. Countdown to his knee replacement. Which I have told him he is on his own with this one I am not going to be the nursemaid again.
I feel so bad having to be like this, my tension is already back after being gone for 3 weeks.
Still dealing with the BIL in the NH across the country to see if hospice is the right choice.
Having to tell him to clean the bathroom after he uses it and watch his spending is not what I signed up for.
Tired and depressed already. Not even 24 hours.

TG unfortunately I don't believe you do get it.
What needs to change is this deep seated feeling you carry around that you are supposed to bear every one's burden and that you are somehow at fault for finding that too difficult. Pretend for just a moment that your father is a boarder in your home and you have no blood ties, would you allow him to behave the way he does? Would you continually bail him out from his own poor planning and choices? As your father, would you allow him to treat a stranger that way if he were living elsewhere?

(wait, going by everything you've ever told us you probably would... sigh)🤗

TG; Please read this:
"He tells me he was bored because he had no car at my siblings."

Your sibling did not feel obliged to give him a car.

"He didnt spend much while at my siblings"

Because he KNEW that they weren't going to give them any money.

YOUR SIBLING clearly knows how to say "No, Dad, no can do".

The question is, why can't you say NO to your father?

That's the question any therapist is going to ask you.

Boogie down alright down boogie down
lets groove tonight...

I'm sorting thru feelings right now. My mom has been declining slowly since February. Now it's her cognition that's diminishing, making me wonder if she's had another TIA. Old memory things like grandkids names are going, and I often wonder which daughter she thinks she's talking to. Because her ongoing goal has been to move back in with one of us (she lived with daughters for 20 years), that thought is now the one right in front. When I don't take her home with me, she becomes upset, angry and sometimes nasty. It's been affecting my health so I've stopped visiting, as it isn't good for her either. So very sad that at this last stage, neither daughter can calm or reassure or comfort, but we create pain for what can't be. I'm a fixer/nurturer by nature, so it feels so odd/weird/wrong to have to accept that I can do nothing to help her. Knew this journey would be a challenge to the end.

((((((Linda)))))) I am glad you have set those limits, Nothing good is accomplished by you getting sick and your mother getting upset. I totally understand. I was in much the same position the last phase of mother's life. My visits did nothing good for her or for me. Be comforted that you have and are doing all you can to see that she gets the care she needs. I wish it was easier for both of you.

The latest excitement with the kitties is that they have gone out in the back yard a couple of times. The first time Pumpkin did NOT like the feel of the grass under his feet and - hop - hop - hop reached the deck and stayed there, shaking his paw after testing the grass again, Rocky was more adventurous and skulked in the tall grass at the edge of the lawn, but came in after about 10 mins . This afternoon they both played under a large tree and in the bushes and obviously had fun. One pot of plants bit the dust this morning so I had a clean up job to do and scolded them. They are larger and more energetic and wanting to get into more things, On the other hand they are very lovable and cuddle with me for our nap on the sofa in the afternoon. Rocky is totally comfortable with being stroked, having tummy rubs, ear rubs etc when he is cuddling. He still doesn't like to be picked up but I am working on that. They are very cooperative at bedtime. Usually I pick up Pumpkin when he shows he is ready for bed (in the basement). and walk downstairs. Rocky follows. I get Pumpkin's canned wet food (he LOVES it) and put it down for him in their room, Rocky follows and plays or eats the dry food (his preference), then lights out, door closed, and they are contained for the night. Their room has food, water, 2 litter boxes, toys, cushions and a cozy bed. Whoever is tossing up fur balls is very considerate and does it right by the litter boxes.

re furballs - gershun have you given them hairball control treats or food?

The interment is arranged for Sept 25th. I am having the urn sent down east to the Cemetery guy. I will not be going. One or two cousins may go as well as my sis and her husband, It is more stress than my mental/physical health needs.

Speaking of which I am doing well. There is life after a narc parent I am slowly getting more energy back. My dd and family are all in their home Granddaughter didn't stay long as grandma (me) expects her to do chores!!!! It's a tough life isn't it???

So the peace of my home is only disturbed by my precious kitties who are a little extra work and a lot of extra joy. Holidays postponed again for a few weeks while some stuff gets worked out. I want to go south to see my oldest son and from there we will figure out some things of interest. Love this time of year - its so mellow!

Be good to you - you are worth it,

Its made a lot of relationships foil

Gold- I am so happy to hear you are finding peace and serenity in your life right now. The kitty stories are delightful as always. Thank you for sharing

Linda - I can relate to your feelings. I never know what to expect when I visit my Mom. Sometimes she is calm and OK but then there are those visits when she becomes agitated and angry over things that cannot be changed. Like you, I learned to "take a break" from visits when she is like that. It is draining and leaves me without the energy to take care of other things in my life. Visiting her when she is like that does nothing to help her and it hurts me. I am now able to let go of the guilt and do what made sense. My Mom is angry less often now because she is taking an antidepressant. I wish you the best.

Sorting through feelings here too. I have to inform my cousins and my sister that I will not be going to the funeral. It is not a comfortable thing and I expect there will be some questions. I want to convey the information initially so as to not leave much room for questions. I know I don't have to answer to anybody, nor do I want to stir anything up. Truthfully I am burnt out from a lifetime of family dysfunction, and the years of various duties which are not quite yet finished. Seeing my sister is always stressful and not going is largely avoiding that. I thought I could put on the social face and do it until my niece chose to commit suicide. That finished it for me. Can't play the social game any more, 👎

Golden, I am so sorry for the continued stress caused by the dysfunctional family. There’s nothing wrong with not going to that funeral. I’ve skipped some of life’s landmark gatherings myself. I choose to no longer be the family scapegoat.
One of the many online psychology writings I remember, when searching in a very dark hour, written about narcissism and scapegoating sticks in my mind. The author’s observation was that in her many years of counseling experience, very often the scapegoated family member is the most emotionally healthy member of the entire family. It took a long while for me to absorb and embrace the wisdom in those words.
I hope you can find some peaceful moments through all this.