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hey Cindy,

That was quick!

Here's what i'm thinking. as they say in AA, take what you like and leave the rest.

I have been a caregiver, and I am also a social worker, now working as a therapist and addictions counselor in the rural west. i used to live in DC, and i was a medical social worker for decades before becoming a therapist, in neurology, oncology, and most recently before moving west, hospice. I respect the work you do so much! If it wasnt for a lactation consultant when my son was born, he'd have been bottle fed. (The advice to make a 'nipple sandwich' was right on! Before that i had to do lamaze to get through latch on!) My hat's off to you. RNs rock.

 

As for your family dynamics, i wonder if it might help for you to see a therapist. The reason being, there's a fair bit of conflict, and i'm guessing, a serious difference in styles between you and Gene. If he were well and independent, you could go on and enjoy your kids, and he could be ambivalently and loosely connected to his, and what would be the harm? But i'm hearing lots of friction in what you describe. You could have 50 minutes of someone's undivided ear, and get some tips on how to deal with his family, as well as how to deal with him. I don't think i would have survived caring for my mother, along with my dad and sister: she was so difficult, resistant, and abusive. She died at 55 for completely preventable reasons. Therapy saved my behind.

      So that's one thought.

       Another thought is an echo of what i said earlier: your husband is not you. I bet you are an extrovert, love being around people, engaged and open to new experiences. Your husband has suffered a terrible disability which has harmed his brain. Lemme guess; he was an introvert BEFORE his disability. He's old school military. Gruff, follows orders. Not an enormous emotional range. His wife did all the emotional labor in the marriage, or most of it. The kids miss her and always will. And you are a take charge kinda gal. You're proud of your kids. You're annoyed at his. 

      He's an introvert, with short term memory loss. Who knows what else his brain is having trouble with. He's retired military. Paranoia is an important life skill in the military. Worry about hacking makes sense. How is he going to learn new things, meet new people, in a new place, with a brain injury? Seems like a tall order, and on your terms, not his. Not saying your terms aren't fabulous. They're just yours. Right?

       I dunno, seems like a disconnect to me.

       Oh and yes the VA is such a royal pain, everything takes forever. But there should be some kind of help there even if you are over income. I would gladly pay higher taxes if i knew they went straight to helping veterans!

      Anyway, just my 2 cents based on what you've written and my own bias. You do sound like a strong and smart woman. I hope you can retire at some point and do more of what you love to do, even though working with babies and moms sounds like a dream job. 

        I also hope others will write. There are a whole lotta threads about a) getting the sick person to do more for their own good and b) family dynamics. Oh yeah.

 

And hooray for grandbabies.

Jane

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Good Day, Jane!

 

Thanks for getting back to me!

 

My sons, daughter-in-law and year old granddaughter live only 10mins from us!!! My sons are helping out all the time --- we have at least a monthly dinner where we rotate our homes --- and we're always getting to gether for last minute things. My married son manages a bar and restaurant, so I look to go there last minute to see him and get a discount on my/our bill. However, whenever I do these things, I include my husband, but it appears to me he doesn't truly enjoy himself. Even at times he comes up with an excuse (which is usually I just want to stay home) not to go.

 

He is the widower. He first wife passed away from colon cancer at the young age of 39 back in 2001. He youngest (a daughter) was only 15yo at the time. I came into his life in 2005, after divorcing in 1999, and NEVER WANTED or tried to be his children's step mother. I hate it when people refer to me that way because his daughter was 20yo when I met her and already "raised".  Nonetheless, in the 13 years that I have known his daughter if she has said 3 dozen words to me that is a lot.  When we moved in together in 2006, buying a ranch home to accomodate my disabled son and his 3 adult children (my middle son was already out in Pittsburgh going to college and my youngest split his time between me and my ex -- we only lived 15mins apart in the same school district) his children treated me as if I was invisible. My husband was already retired military and only working part time as a correctional officer at the county prison. His children never realized that "pops" wasn't making $90K anymore as a computer programmer, he was only getting a meager military pension and partime employment from the prison. I was the one truly supporting them. BUT he never told them that. It truly was not a comfortable time --- my only salvation was caring for my disabled son and me working full time night shift!  I didn't have to deal with his children when they were home on college break in the summer. What got my goat was he NEVER made them work in the summer to help with college costs or living costs. His excuse --- they need a rest and they can't work and go to college, they're grades will suffer.  He promised his deceased wife he wold pay all their college expenses; but that was before he lost his $90K/year computer programmer job.  He said he had to keep his promise to her! Nonetheless, even before my sons were in college they worked part time and kept up AWESOME grades in honor courses in high school. Then when my disabled son was in college (he wasn't disabled initially --- he was an honors neuroscience major at the University of Pittsburgh when he was diagnosed with MS) and my middle son was in college they worked full time and still kept up good grades. My youngest, well my ex and I slacked on him --- he never worked until out of college -- he help all the time with my son when he became disabled.  I guess what I'm trying to say here is my husband, Gene, had a lame excuse for his children not working!  My sons proved you could go to school (high school and college) work, have extra curricular activities and still get good grades in honor courses! (sorry to brag!)

 

Even though my ex and I have been divorced since 1999 we can still converse regarding our sons!!! Weddings, birth of a grandbaby, sons extra curricular --- we can be civil and talk.  My communication with my sons is AWESOME!!! Even when I lived on the other side of the state they'd call all the time, text all the time. When my husband suffered sudden cardiac death my son who lived in Pittsburgh at the time would call constantly to see not only how his mom was holding up, but Gene who was not my husband at the time.  Gene's children --- they would never call. I had to update them and keep asking/saying --- you know we are not legally married, I shouldn't be making these decisions. when are you coming home!  It took them two weeks to show up at the hospital and then it was under protest!  One of the docs on the case wanted them for a family conference at 0700 one morning at the hospital before he made rounds. His oldest son, who at the time was unemployed living in Maryland complained so loudly on the phone!!!  They finally showed up though; and the doctor's reply to them was "You should listen when she (meaning me) tells you something and informs you that you need to be here.  She knows what's she is talking about!"

 

So right from the get go my relationship with his children has not been good. But from the way he speaks his relationship with his children when they were younger may be to blame.  His deceased wife was the one who though she too worked full time, she was involved in their lives. Gene, being military, was the disciplinarian. So this children may resent that.  Thier communication with their father is practically nonexistence.  The only time they contact him is when they want something --- out of sight out of mind!!!  NO matter how much I tell Gene to contact his children --- text them, call them, see what they're up to --- he doesn't. I hear from at least one of my sons and/or daughter-in-law at least 2-3 times/week!!! (and they only live 10mins away) I use to feel guilty about it because Gene doesn't have that kind of relationship.  But you know what --- that's his loss!!! I'm not going to lose my relationship with my sons and granddaughter!!!

 

We've attempted to get Gene hooked up with services at the VA which is within 15mins of our home here in Pittsburgh. Was that a fiasco!!!  I was hoping Gene could partake of the Adult Day Care activities which my daughter-on-law (the social worker) raved about. Turns out being I make TOO MUCH money we have to go through this long detailed application process!  The process has started but goodness knows how long it will take to complete and even is he will be allowed to go to activities at the VA!  Its too complicated to explain it all here!

 

My daughter-in-law has even given Gene the address of the local Senior Citizens Facility encouraging him to check out their activities!  He looked them up online and hasn't done anything. That was over a month ago!!!

 

We contacted a companion organization to see if someone could come in 1-2 times/week to visit with him. Unfortunately at this time they do not have enough volunteers so he is on a waiting list.

 

Though he was once a computer programmer, his skills on the computer are very limited anymore.  His skills are somewhat outdated and he doesn't explore enough on the internet to better them. He is always afraid of "spam" and "hackers" so he doesn't surf the web very much!!

 

I have sugessted free online courses in a lot of things, but again he's afraid of "hackers"!

 

His daughter was married in June. The wedding was in Maryland. An incident occurred that I could not attend with him, but I got him to Maryland for the wedding. A small wedding, mostly family on both sides. His sister contacted me by phone the day before complaining of how "puffy" Gene was, and how slow!  What was wrong??? I said, Susie, welcome to my world. You and family has not seen him in over a year, you don't keep in touch. How he is now is his normal!!!  But would any of them say about coming to visit or bringing him home to Pittsburgh from Maryland. NO!!! I had to drive down to Maryland to pick him up!  Though his daughter lives in Colorado, he has not heard from her since the wedding 6/15. That's over a month!  No wedding pictures, no thank you for the wedding gift!

 

And his son who lives near Philadelphia with his grandson!  He is not married to the child's mother who has another 11yo son by someone else. I work in maternity so I know you don't have to be married to have kids!!! But this son was at the wedding with his girlfiend and the two boys. He got my husband, Gene's, hopes up saying they were going to spend some time together.  Well, that never happened; appears they overslept the morning they were to visit with Gene, so he just saw everyone the evening of the wedding.

 

My husband's other son --- the one he put up on a pedalstool --- will be released from a Federal Pirson/Psy Hospital in May 2019; he went AWOL from the military and robbed a bank at gun point!!! Gene had not heard from Michael in almost 10 years!!! Prior to her wedding, his daughter contacted Gene saying Michael sent his father a letter (at our old address) and wondered why it was returned to him. Well if you don't have contact with anyone in your family for almost 10 years how are you to know anything, and how is anyone to know anything about you!!! Michael was looking for some place to "crash" after his release. In no uncertain terms I told my husband --- I supported Michael while he was in college and there is NO WAY I am supporting a convicted felon when he is released from prison. My son and daughter-in-law have already informed me if Michael moves in with us I will never see my granddaughter again!!! SO, SORRY MICHAEL you need to find somewhere else to live!!!

 

Mu disabled son passed 1/26/2011 at the age of 30.  His passing was a blessing in disguise. He had a genius level IQ in a body that did not cooperate. He had such debilitating MS --- he was legally blind, confined to a wheelchair, unable to walk, had an indwelling foley catheter and such spasticity even when strapped into a wheelchair that was no guarantee he would not fall out. As I said the night he passed --- he can now run free with the wind and read all the books, play all the Scrabble games he wants, play all the musical instrument he wants and sing with angelic choirs!!  John still makes himself known in quirky little ways; still communicates with his mother and brothers.

 

When we lived back in Lebanon PA Gene was a bit more active. But as you have said, he doesn't know Pittsburgh yet!  But he doesn't attempt to know it either. Also, I think not only is it his health, but his age, his is going to be 62 (which is younger than me, but with his heart condition) that slows him down. And as stated his short term memory sucks!

 

Your last line JaneI ---"he isn't complaining and seems content, perhaps his quality of life is pretty good -- not what you'd choose, but you aren't him? " may be correct! I have always been active in my sons' lives and it never bothered them at all. My youngest, Andrew who is 26, likes "hanging out with mom" though I feel he should be spending his time possibly finding a girlfriend!!!

 

Your ideas Jane, are not new to me!!!  And how else am I taking care of myself --- spending time wtih my sons, daughter-in-law and granddaughter; surfing the net; definitely working. I am employed full time as an RN/Lactation Consultant so I get to assist mother-infant dyads with breastfeeding and starting on their journey together.  It is usually a "happy" part of the hospital.  I continue to educate myself for work keeping up with CERPS and CEUS.  Read a lot of mysteries; listen to music and when off from work, stay up late at night when the world is quiet!

 

I thank you much for getting back to me; for your insight and suggestions. And I hope to hear from others out there!  I apologize in advance for bringing anyone down!  I hope to be able to help someone on here, just be reaching out and touching through conversation!

 

Again, many thanks, Jane.  Hope to hear from you soon!

Cindy

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@clwolfee wrote:

Hi! My name is Cindy. I have been my husband's caretaker since before he was my husband. He suffered sudden cardiac death in 12/2009. Initially, when we started living together in 5/2006 we said we would never marry again --- he was a widower and me a divorcee -- agreed that we had been there, done that, and didn't need to get married. Between the two of us we had 6 children --- he 2 sons and 1 daughter and me 3 sons. Well crazily enough we married in 1/2010 once he was discharged from the hospital after sudden cardiac death. His children were not stepping up to the plate to help care for dad. While he was in the hospital it took his children and his family almost 2 weeks to come to visit. I wasn't even legally suppose to be making decisions, but being I had worked at the hospital for over 15 years and knew many people, then continued to keep me in the loop. When he was discharged 6 weeks later, even though his family lived closer (1 hour away) no one would come to help me. And at that time my oldest disabled son was still alive, living with us. So I was working full time, caring for my disabled son and then caring for my medically compromised husband. Nonetheless, life has been one roller coaster since then. And to make matters worse --- I am also his worst nightmare -- I'M AN RN!!! So I do Nursing 24/7/365 with very little down time. Yes, I am the breadwinner of the family while he collects a merger military pension and medical disability. Nonetheless, I finally did one good thing for myself --- in December 2017 I moved us closer to my sons, daughter-in-law and 1st grandchild in Pittsburgh, PA. My children only live 10mins away from us!!! Nonetheless, my husband likes to make me feel "guilty" by advising the "few' people we meet that when we lived on the other side of the state we lived closer to HIS 1st grandchild. However, what he fails to tell these people that in first year of his grandson's life he ONLY saw him 3 times, and those times we had to make an appointment!!!

 

My concern regarding my husband, since we moved to Pittsburgh, PA in 12/2017 he just vegetates in front of the TV and/or computer screen all day; he plays the mundane free games which come loaded on a computer or watches reruns from the 60's. I've tried to get him to play the mind challenging games on AARP but he doesn't. Granted he walks our dog 3-4 times a day, but he interacts with NO ONE!!! His short term memory is terrible!!! He can remember things from when he was in high school and the military, but if you ask him what he did yesterday or today he cannot remember. My daughter-in-law who is a social worker has given me info/ideas of things he could do, but he does nothing!!! I've even commented to his PCP about his isolation and possible need for a mild anti depressant; but my husband's comment is always "I'm NOT depressed!!! I don't need anything!" Nonetheless, he will ONLY go anywhere with me, NEVER on his own and I'm an RN working fulltime 12H shifts!!!  When I do get time off it seems I am always taking him to doctors' appointments!

 

If/when my sons and daughter-in-law invite us to do something, he either doesn't want to go, doesn't go or if he does go he doesn't interact with anyone or falls asleep!!! One weekend I asked my husband to go to a play in Pittsburgh to see The Full Monty; I had a Groupon, I could get two tickets for the price of one! NOPE he wasn't interested in going! So my youngest son (26yo) wanted to go. Thus, my son and I went; he treated me to dinner first! I had a wonderful time! However, when I got home about 1130pm, my husband who was still awake, wouldn't speak to me !!!! Its really starting to try my patience!!!

 

I know this is not exactly the way to introduce myself, but I needed to vent! Sorry :-(  Any comments, suggestions, ideas, input, insight would be greatly appreciated.  Thanks much for listening. I hope I haven't offended anyone! Have a Good Night!


Hi Cindy!

 

You really have your hands full!

 

Where do his kids live? Now that you've moved to Pittsburgh, which is an awesome town, I wonder how his kids can help you and give you a break now and again? I wonder, are they mad at him because of the way he left their mom? It's amazing how long resentments over divorce can color a relationship with a parent. And/or, are they 'just' pre-occupied with their own lives and not thinking beyond their own needs? "Busy" is not an excuse, IMHO.

 

Regarding his inability to get involved in anything or anyone outside of you and home --- His short term memory probably seriously impairs his ability to find a person he can get to know and remember what was just said, let alone follow the plot of a movie. (The Full Monty is a HOOT. I'm glad you got to enjoy it with your son!)   And he doesn't know folks in Pittsburgh.

 

Your daughter the social worker has probably suggested all kinds of things that i'm going to suggest (i'm a social worker, too, and not from Pittsburgh although very good friends of mine live there!)  Here's what i'm thinking. Does he have any hobbies? Or, does he have a favorite show or movie he watches a lot, from the 60s or any other time?  I wonder if there is a Veteran's of Foreign Wars group, or a VA nearby that has an outreach program? I'm thinking that he might enjoy a fellow military man who'd come by as a volunteer and hang out with him. As a start. My dad was in a nursing home after a devastating stroke, for 7 years, and he watched Patton. Incessantly. A guy from his Civil Air Patrol group came and sat with him about once a month, and they watch Patton. Giving my step mother and me and my sister a break. Finding such a soul is a task, but they are out there.

 

Do you attend a church or temple? Sometimes asking for help through a faith community is a good way to find it. Or, in my small town we have a facebook group for town announcements, and i can just imagine someone asking if a volunteer would be willing to engage a gentleman who can walk the dog but doesn't have great short term memory.

 

There's also skype. If he has a good memory for things that happened long ago, you could set him up with an old friend and one conversation may really improve his mood.

 

I find it sad and frustrating that so many menfolk are so lousy at making and keeping friends into adulthood. It has to do with how they are socialized, but the dependence on their female spouses/partners mean they are really limited at various points in their lives. I hope my son, who's in his 20s, does a better job.

 

Meanwhile, it sounds like your move to Pittsburgh puts you in touch with your adult children and other sources of support. it sounds like your disabled son is no longer with you?

 

Has your social worker daughter looked into day programs? Even one day a week? You or she or one of his own kids could go visit a few times... then drop him off there one day... 

 

What do you think of my ideas so far?  How else are you taking care of yourself?  If he isn't complaining and seems content, perhaps his quality of life is pretty good -- not what you'd choose, but you aren't him?

 

Thanks for writing. Write more!

Jane

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Hi! My name is Cindy. I have been my husband's caretaker since before he was my husband. He suffered sudden cardiac death in 12/2009. Initially, when we started living together in 5/2006 we said we would never marry again --- he was a widower and me a divorcee -- agreed that we had been there, done that, and didn't need to get married. Between the two of us we had 6 children --- he 2 sons and 1 daughter and me 3 sons. Well crazily enough we married in 1/2010 once he was discharged from the hospital after sudden cardiac death. His children were not stepping up to the plate to help care for dad. While he was in the hospital it took his children and his family almost 2 weeks to come to visit. I wasn't even legally suppose to be making decisions, but being I had worked at the hospital for over 15 years and knew many people, then continued to keep me in the loop. When he was discharged 6 weeks later, even though his family lived closer (1 hour away) no one would come to help me. And at that time my oldest disabled son was still alive, living with us. So I was working full time, caring for my disabled son and then caring for my medically compromised husband. Nonetheless, life has been one roller coaster since then. And to make matters worse --- I am also his worst nightmare -- I'M AN RN!!! So I do Nursing 24/7/365 with very little down time. Yes, I am the breadwinner of the family while he collects a merger military pension and medical disability. Nonetheless, I finally did one good thing for myself --- in December 2017 I moved us closer to my sons, daughter-in-law and 1st grandchild in Pittsburgh, PA. My children only live 10mins away from us!!! Nonetheless, my husband likes to make me feel "guilty" by advising the "few' people we meet that when we lived on the other side of the state we lived closer to HIS 1st grandchild. However, what he fails to tell these people that in first year of his grandson's life he ONLY saw him 3 times, and those times we had to make an appointment!!!

 

My concern regarding my husband, since we moved to Pittsburgh, PA in 12/2017 he just vegetates in front of the TV and/or computer screen all day; he plays the mundane free games which come loaded on a computer or watches reruns from the 60's. I've tried to get him to play the mind challenging games on AARP but he doesn't. Granted he walks our dog 3-4 times a day, but he interacts with NO ONE!!! His short term memory is terrible!!! He can remember things from when he was in high school and the military, but if you ask him what he did yesterday or today he cannot remember. My daughter-in-law who is a social worker has given me info/ideas of things he could do, but he does nothing!!! I've even commented to his PCP about his isolation and possible need for a mild anti depressant; but my husband's comment is always "I'm NOT depressed!!! I don't need anything!" Nonetheless, he will ONLY go anywhere with me, NEVER on his own and I'm an RN working fulltime 12H shifts!!!  When I do get time off it seems I am always taking him to doctors' appointments!

 

If/when my sons and daughter-in-law invite us to do something, he either doesn't want to go, doesn't go or if he does go he doesn't interact with anyone or falls asleep!!! One weekend I asked my husband to go to a play in Pittsburgh to see The Full Monty; I had a Groupon, I could get two tickets for the price of one! NOPE he wasn't interested in going! So my youngest son (26yo) wanted to go. Thus, my son and I went; he treated me to dinner first! I had a wonderful time! However, when I got home about 1130pm, my husband who was still awake, wouldn't speak to me !!!! Its really starting to try my patience!!!

 

I know this is not exactly the way to introduce myself, but I needed to vent! Sorry :-(  Any comments, suggestions, ideas, input, insight would be greatly appreciated.  Thanks much for listening. I hope I haven't offended anyone! Have a Good Night!

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