The Caregiver & Dysfunctional Families: How are you doing?

Emjo i was paranoid enough about not getting sick that when we made a 5 hour drive to spend Christmas I was paranoid enough to wear rubber gloves to go into the public rest rooms on the way.

Veronica - at my age that sounds sensible lol. I may do that too

Oh crumbs - I can either catch up on everything I've missed or I can update, dither dither… My apologies to everyone I've missed - has Tamma updated on her mother? - but at a quick scan there have been some very decent Christmases going on so that's something! Judda, I'm so sorry for your poor father's heartbreak. Nothing you can say will do, but you have to say something. Being there is more than nothing, just not much consolation. I know how tempting a companion animal is as an idea - I've privately promised myself that if I can get my mother home I'll get her a cat. Can't think of anything else that's going to do much for her quality of life.

I'm sorry, this is scrambled - mother, and thank you so much to everyone who has asked, is, um. Oh dear. Well, still in hospital. I'm still very happy with the care she's getting -

Aside: it takes two people to transfer her for now, and while I was there a female nurse and a big handsome HCA turned up to do the job. I loved the nurse's approach to getting mother to co-operate, heard from behind the bed curtains - "Can I have a cuddle?" - must remember that one.

- and this afternoon met her new stroke specialist geriatrician. Nice Scotsman, seemed terribly young to me but that's just me, and very patient while I asked him impossible questions and picked nits for nearly - cripes! - forty five minutes. And the poor man had probably already had the day from H*ll. And I knew he had other relatives to see because his secretary told me that earlier on… I hope to goodness they weren't annoyed if he was late. Anyway.

She has had a whopping great stroke in the main artery of her right brain. He's not optimistic about rehab (I frowned when he gave age as a factor, but to be fair it is a fact), mainly because the rest of her brain can't compensate reliably. He wants to hang on to her for the time being to be sure that she doesn't come bouncing back on to his ward five minutes after he's discharged her. She's off oxygen, fingers crossed; eating (mush, yuk) and drinking (gloop, yuk); continent in that she's aware of needing to go but a bit stuck in that it is very difficult to get her transferred in time - they are doing their best, nobody is ignoring her dignity. In spite of lovely SIL the psychiatrist's warning, her mood is definitely dipping -

Did I mention this? Lovely SIL said brightly to me yesterday "we just have to make sure her mood doesn't dip." Are you kidding me???? She's paralysed down her left side, she can't see out of her left eye, she can't even have a cup of tea - how exactly am I meant to make sure she stays perky???

- what she was getting at is depression and anxiety as a post-stroke complication, and she's right, it looks like they're setting in. Mother reads too many newspapers: today she said to me "I don't want to be a bed-blocker." We have a problem in the NHS with acute hospital beds being taken up long-term with people who medically shouldn't be there but have nowhere else to go. This does not include people who have had a cerebral infarction less than one week ago. When I told her doctor what she'd said (I thought it would amuse him that she'd used the media headline description) he was livid, thinking she'd heard it on the ward. "NO ONE on this ward would have said that to her!" Oops. I reassured him that I was quite certain they wouldn't - but she's picked it up somewhere and it's on her mind.

I was also surprised that the dietitian (I'm going right off them as a breed) had described mother as obese in her hospital record, with a little hand-written note in the margin "heavier than she looks." Mother is not obese. But then she isn't 5' 2" tall, either, as was also recorded - she nudged 5' 8" as a healthy adult and although of course she's shrunk it isn't by six inches.

Nice surprise while we were getting her supper together - her bedside phone rang. I didn't know it had been set up, I certainly haven't bought her a pre-pay card for the unit because she's not going to be making calls or watching TV. So I answered - it was my brother. Well stone me - where'd he get the number? I haven't even got it! She managed to say a few words to him, with me holding the phone by her ear, then asked me to take over. I told him I could authenticate that it was mother speaking because she'd said "when are we going to see you?" - her stock greeting to him, what she invariably says. He laughed, a bit too much. I felt quite sorry for him, actually. Anyway. I told him I'd seen the consultant and he could ring any time if he wanted an update. Weird. You'd never have guessed we had a problem with each other. But I doubt if he'll ring.

Gave mother her supper, rooted around in the nurses' fridge for her favourite yoghurt instead of the hospital dessert, and - the key thing - don't think I got in anyone's way or disturbed any other patients, so fingers crossed they'll gradually let me start being there for regular mealtimes. She ate quite well. But she looked so unhappy. You can be as reassuring and consoling as you like, but it's not going to get her back on her feet tomorrow. Or even make her able to move her limbs without help. I really don't know what to wish for.

And it's a twenty mile round trip and the car parking is insanely expensive. These things shouldn't matter, but seven days a week they start to. And there is only one of me, and it takes two to raise her. Better and home in a fortnight but needing round the clock nursing care well over my (non) pay grade, or another big stroke while she sleeps. As best case scenarios go, those both rather suck.

Sister helpfully emailed to remind me that I must inform the government if she's in hospital for more than 28 days so that they can stop her Attendance Allowance. Actually I'd spoken to them this morning anyway, and I have to say they were a heck of a lot more constructive and sensitive than she was, and it's their money! Oh well. She just wanted to save me getting into trouble… And besides she's off to the Far East for a month's holiday this week, so I won't have too much opportunity to get pissed off with her.

Emjo, you can't waste that hair style you had done just before Christmas - call one of your Ed. friends and be ladies who lunch for a day! I must get to bed, hope to catch up properly tomorrow -

Me, what are you thinking about what people have suggested? I haven't chipped in because a) I'm too distracted and b) there have been much better ideas than I've had to contribute; but I would so love to hear you've taken just one positive step?

Hugs, back soon xxx

on Xmas day I briefly checked in with mom. brother was with her. i went on a park tour and had a great time. i was worried about having to be around toxic behavior and figured it out and gave myself permission not be be around energy that is unhealthy for me. still living in same building, separate apt and caring for mom and house etc feeling overwhelmed but some days are better than others. i have to realize this situation i am in is not fixable or can be resolved. i can only manage it with some days being better than others, setting and maintaining strong healthy boundaries and maintaining my own life. i am just beginning to do this. most of the time i feel i cannot do enough and cannot get my head above water. but i realize i lack confidence in my abilities. i usually take care of what needs to be done. i have really started living my own life in the midst of this extremely difficult time. it feels meaningless and maybe later on all this pain and angst will serve some purpose. i just cannot see it now. shout out to everyone-hold on to yourself and your life in the midst of all this caregiving !

me 1000=just got home from seeing my counselor. I am facing the saddest event in my life: putting my mother in long term care. It's either her or me and I have to choose me. I am emotionally spent, cry all the time and have sibling that say they hate me and have not lifted a hand to help. Jan 15 is the move date. My daughter who is a PA is coming from North Carolina and my husband are going to do it for me. I don't have the courage. I just want to have some peace and not feel bad anymore. To h*ll with my siblings, they just want the money, which they will get someday. I'm not going to think about them or talk to them until I feel like it. It's been 3 years living 4 hours from home. Thank God I have a loving understanding husband and the funds (haven't taken a dime for caring for Mother) to have done this, but I have to save myself now. I am POA for everything and I'm not going to be bullied anymore. Please pray for me to keep my sanity on Jan. 15. I just want to live.

cm - thanks for the update although it is not the best news for your mum. I understand that post stroke depression is a biological thing. I hope it is treatable. Your mum has a lot to contend with and depression could well occur for situational reasons. What a blessing that the care is so good and that your brother rang. That must have pleased your mum. It is hard to know what to hope for. Re the hair do, it went south days ago. I don't know what he did or didn't do, but the static was terrible after I combed out the hairspray. I conditioned it, and the next day it was just as bad, so I have been applying coconut oil the last couple of days and will wash it tomorrow and see what happens. He didn't really style it, more just blew-dry it The girl who used to do it did a wonderful job, but she has left and I haven't been able to track her down. :( Hardly have any E'ton friends any more. They are dropping like flies! I will visit ex mil in hospital. That will be my socializing!

Hi jen - it is so important to establish a life outside of caregiving and especially so when there are toxic relationships. In your profile you mention several interests and a job. Good for you. Have you thought ahead of what you will do when your mother has more needs? It is inevitable and she already has reached a decent age. I am having to think that way myself. Your life is not meaningless. I totally agree - hang onto it in the midst of caregiving. ((((((Hugs))))

Speaking about sending flowers - I sent three fairly costly arrangements and haven't heard a thing. Mind you, two went to hospitals and one to an ALF which is to G's parents. Once he has visited them, I can usually pry out of him that they got them. I would just as well not hear from mother as there are always complaints eventually, and mil is in no position to send a message. It just seems strange to send the money out into cyber space and have no idea if what was ordered arrived at the proper destinations.

Brinoz - it is sad, but you ARE doing the right thing.

brin ((((((hugs))))) to you too. I must say I don't quite understand the extreme stress/sadness putting your mother into an ALF has on you. You are getting your life back, and your husband and daughter are supportive. Join the crowd of caregivers whose sibs hate them. Mine hated me all my life so this is nothing new - it is just coming out of the wood work more. You have been away from home a long time. Can you look forward to getting your life back? Great that you refuse to be bullied. I have made that decision too. Certainly you have my prayers - try to see the benefits in this move.

My mother is the most loving and giving person you would ever meet. She worked 3 jobs to feed the 4 kids and a lot the time, our friends also. She had to put her own mother in a nursing home and it was so hard on her. She has had so many hurts in life and now I will be hurting her. We have grown so close these last 3 years. I miss the mother that this terrible disease has taken from me. I never thought she would grow old. All she ever wanted is for us kids to love each other and now at the end of her life hate abounds. I just wish we could all come together at this sad time, but am not expecting this to happen. I will see her often and set her hair with those pink rollers with the pickies. God I miss her and want her back. Just need to see councilor every week until the 15th of Jan. Please pray for the strength I need right now and in the weeks to come.

Brinoz, It is good that you are following through with this decision. Keep reminding yourself that her doctor said that she needs to do this. You know that you need to do this.

Your mother is going to have to make various adjustments and I remember that you wrote on one thread that your mother hates change. It sounds like you are continuing to grieve the "loss" of your mother for as you wrote, she is not longer the same person and you miss her. Such anticipatory grief is understandable and rough at times to go through. I would imagine that moving your mother into long term care makes your anticipatory grief even deeper.

While that is sad, you can also look on the bright side of this. She is going to be safe and cared for 24/7 by professionals who care and also get a break after a 8 hour shift. You will have your life back after being there for your mother 24,7 on your own for three years and 200 miles from your husband Try to focus on the good that this decision is bringing to both your mother, you and to your own family.
Give yourself the permission to feel some peace and relief now and after this move is made on January 15, I am glad to hear that you are still seeing your therapist. I'm sure they are a great source of support. Keep going. Hugs, prayers and love.

Brin - your mother sounds like a wonderful person. It must be awful to see her devastated by this disease. What cmag has written is so true.
Really, if the doctor says she should be in a facility then that is the best place for her. Unfortunately, as our parents get older, we sometimes have to chose between their safety and their preferences. I have had to make some of those decisions this past year particularly, and it is very difficult.
You are grieving the loss of the mum you knew and it is important to go through that process and feel the feelings.
Take some comfort that you will be able to see her often and do some of the familiar things with her. I am sure you will get through this and be the stronger for it. It sounds like you and your family need a lot of healing. In the midst of this do something good for you.

Me - ((((((((((((hugs))))))))))))))) - just that - (((((((((((((((((hugs)))))))))))))))))

Judda – I’m so glad that you’re now able to say no and feel fine about it. I can do that with caregiving. Unfortunately, I’m not able to apply elsewhere in my life (like work, other family, etc…) But it’s the caregiving one that’s important because that’s the one that can really drag us all the way down to the bottom.

Sandwich – sorry to hear that your mom has reached this stage. When my mom was always going to the ER for pneumonia, that’s when my brother said that pneumonia was an old person’s friend. It does sound like hospice is in her near future. Hopefully, she’s being kept comfortable and not in pain. … I have found that when mom was diagnosed with dementia, her own siblings rarely visited at all. They just don’t know how to react to her. And I think that when they saw their sister like that, it scared them so badly that they might also inherit it. So, the See (visit us) no evil (dementia), Hear no evil (don’t ask about mom too deeply), and speak no evil (pretend all is well) works very well with them. When mom died last year, of her 6 siblings, only 2 regretted not seeing her often enough.

Hi eddihaskell. You have 3 great reminders for dealing with our parent. I need to work on #1. It seems dad and I both have to have the last word. =/

Looloo = you have the patience to be ‘nice’ to people on FB. I don’t know if I can be as circumspect as you. However, I AM working on it. I’m trying to be nice to people – and not be short with them. I should not take out my unhappiness in life to other people. Sweet talk to them – even if it kills me (figuratively speaking.)

CM – I’m so glad that you updated us. You have a gift in writing. When you allow your emotions in your writing, I’m able to visualize your words and see your story. If your mom’s like my dad, there will be a period when she’s so angry at the world. Just keep it in mind that this is also part of the aftereffects of the stroke. My dad still had slurred speech weeks after coming home from the hospital. He had napkins to wipe off the saliva that would drip down from his left side of the mouth. Eventually, his face went back to normal. Just take it one day at a time.

Please check if they have programs that your mom would qualify after being released from the hospital. See if you have a similar program there like we have here on island. Meals on wheels for lunch – Monday thru Friday – for dad. He tried the Puree food and hated it. Then they tried grinding it – again he hated it – because it didn’t look like real food but slop (for the pigs.) We also have from our local/federal govt a program in which they provide 4 hours a week to help with the patient or as respite for the caregiver. We took advantage and asked instead of doing one afternoon a week to spread it to one hour for 4 days a week to sponge bath dad. (We did this also for mom – for over 20 years! Once mom was bedridden, I never ever had to sponge bathe her at all. Same with dad, now.) And I’m also a member of the caregiver respite program. But it’s the govt ones that I learned soooo much on how to take care of a bedridden person. I asked lots of questions, too.

Me1000 = I could tell that you’re reaching the end of your ropes. Something had to give. And I’m glad that you’re seeing the problem and the tentative solution. Yes, your grandfather and your father needs more help – other than you. There’s no way that you could have sustained this all by yourself And still deal with your 2 kids. You tried. And it’s not working. Please start making phone calls for your grandfather and father. And if they refuse these ‘outside’ help, let them know in uncertain terms that it’s time for them to get it. Because you tried, and it’s time for you to concentrate on your own children who really needs all your attention and for yourself. Best to use your children as the focal point so that they cannot find fault in this..much.

Jen – you found the secret to caregiving. To caregive without losing you. Are you able to squeeze some time for the next few weeks to learn about dementia and how to remain yourself while doing it? There’s an online Free course that I’ve registered in Coursera. I think classes starts online around Jan 12? When I was reading your words, I thought of this course and you.

Brinoz, Emjo and Cmag said it all. =) .. You take care and just deal with it as it comes. And like you said, you will still be visiting her after the move. Just remember to Not visit her the first couple of weeks she moves in to her new home. Let her get used to it first.

Sharyn, after you last post to me about the Windows gallery, I searched my laptop for it. I didn't know that was even there! So, just now, I opened it up and started adjusting the size, color, etc.. on the photos that I currently have. D*rn it, I already transferred most of my photos from the Snapfire storage. Now, I'm having so much fun adjust each photo still in my laptop. Poor mom's photo was transferred to the CD and flashdrive sideways. With this Window photo gallery, I was able to turn her to a standing position and not lying down. sigh.... If I had only mentioned this sooner..... All well, I've learned something new, anyway!

Book, LOL! I am very happy Mom is upright again!

Me, too. I was literally tilting my head sideways to look at mom's graduation picture with the cap and gown. It was taken vertically but settled horizontally on the camera. And transferred into my laptop horizontally.

bbook-i am happy you are having fin's! Another option is Flickr. it is a photo sharing site that is free with limited storage but for $25 a year you have unlimited storage. There are hundreds of groups on Flickr and may even have on for your island. Tips and photo styles for all creative needs.

And here goes the geographer in me. Sorry, everybody. But did you know that many of your digital cameras have the ability to record the location in latitude and longitide via GPS? And our smart phones have camera apps that do the same thing if the GPS is turned on. And that you can put together a Story Map with the photos showing your location on a map, such a very cool application and all in the cloud! And free access if you have a public account. Google story map there are some really interesting maps out there. It is kind of like the slide shows that we were shown in school, but with an interactive element.

SCREAM!!!

Mother is being transferred to rehab. I get one hour's notice. Why did I even bother asking yesterday????????!!!! Back later hugs to all x

My niece set up the iPad for me. We turned off the GPS/location option. She said that if I turn it on, we can have the "find my iPad' app on. It also has the 'kill swith' capability. It also has a lock out capability that if it's stolen, the person cannot do a RESET on it without my password. The only thing is - if I allow this option, it gives them the right to have access to my 'Contacts' information. When she read that, we both looked at each other and said, "No Way!" So, my GPS on the iPad is off. It's bad enough that FB can take anything you post in it - and use it for whatever they want - even if you put it in 'private.' And once you sign in to FB, and do Not sign out, whenever you turn on your computer, it will track your every move on the web. So, to help make it difficult for them to follow you, remember to log out from FB. Also log out from your G-mail and from your Google account. Make it a habit to clean your cache daily, too. Nosy people!!!

Eureka!! Perhaps I have found a site which will provide some support/advice where others have failed? Has anyone else found that their local Carers Support Group is beyond useless? Even before government cutbacks started hitting? My one in Sutton, Surrey decides intermittently to deliver it's magazine* (* worst produced periodical ever) after all the events have happened! Decided to write an email to them to complain= nothing. Wrote two letters= nothing. Wrote to my MP=he wrote to the Chief Exec and she has never replied!!! Even emailed the Princess Royal Trust for Carers and they didn't reply. Would like to actually meet other "bubbly" Carers, but a group I attended eons ago only had three "normal" people in it; remainder were bereft of any personality....

Am just finding my way around the site. The blogs regarding dysfunctional families sounds right up my street!

Pollywolly

Pollywolly I am afraid the members of your group that you found not to be normal were unfortunately care givers who had been turned into zombies. You will find many strong women and men on this site who have managed to keep their heads above water. When they can't post they are quiet but then feel safe enough to send out a signal for help and the community comes together to lovingly offer idea and experise they had learned on this very difficult journey. Sometimes the advice may seem harsh but tough love always is and it is not meant to be disapproving. you will get to know other caregivers and find they become friends. others can't solve your problems, only you can do that but we have youe back. Blessings. post often, no question is too stupid to write there is an answer out there and soon you will feel free to share your ideas with others.

CM I guess it is good news that Mum is being transferred to rehab. To me it means they feel she is stable and the risk of further bleeding has diminished enough to get her moving again.
The longer she stays in an acute ward the longer she will take to make any recovery and the risk of new clots forming in her legs and chest increases with each passing day. the physios will work with her a lot more and you will be able to learn how to manage her if she is able to come home.
I agree about dietitions but they have to play it safe in the hospital because of the very real danger of aspiration and aspiration pneumonia. Any exercise will be extremely tiring for her so don't be alarmed if you find her totally exhausted when you visit. She has a sweet personality so she will do her very best to co-operate. I am afraid brother will have to agree to let loose with some of Mum's money to pay for help for you in the home, it would probably be cheaper than paying for nursing home care. It is early days yet so no one can guess how this is going to go. My own grandmother had the same paralysis and could not speak and she lived for many years in a chair in the kitchen. i was only 4 when she passed but I don't remember her seeming to be really depressed. I don't know what if any treatment she had recieved as it was over 70 years ago. This is just the one day at a time routine for the time being. Once she has settled in the new place and you are satisfied I would suggest cutting back your visiting maybe to every other day or you won't make it through to care for her at home.
As far as the goop she has to drink once you get her home you can try tiny sips from a spoon of a nice cup of tea. Later you can try a sippy cup. Have you considered some of the baby food jars. Why not buy a few and do a taste test yourself and then jaz them up a bit. A new kitty would be an excellent idea. Can you find an older one that is in nned of a good home because some one has to move or has passed and the cat needs a loving new home. thinking of you. Hugs

Me,

I don't think you're suicidal. This is why I think others should try to refrain from suggesting something as such, and not paint such dismal and dark pictures about what could happen too you. As far as I know, no one is a qualified counselor, nor psychiatrist!

But I will say this.......I don't think we have to remind you about how stressed you've become. As others have already stated that when someone is so immersed in dysfunction it is hard to see the forrest from the trees.

You keep saying you need a job. I think that if you start to make some moves in that direction, things would dramatically change for you. One thing that could happen.......is now you'd be on a schedule, for compensation and you wouldn't be available for grandpappy! That would be a good, good thing all the way around for you, because now you'd have your OWN money, which brings me to something I've heard you say over and over, which basically amounts to that I think you feel like you're being held hostage to the so called "good deeds," towards you and your family by your grandfather, and possibly by some belief on your part that he's to leave you and your family something. Do you know this for a fact, as in iit's been spelled out in a will, or a legal document? Many times an elder will tell the caregiver they rely upon the most these kinds of twisted truths, just to find out later
this was not reality at all, and also to manipulate you.

T;he situation with your kids, honestly cries out for way more time and attention towards them, but how in China can you even think about that, when all your energy and attention continues to be dissipated by other's? You have energy leakage going on my dear. Anyway, I just hope you would try to ponder some of this, as an adult . You're a mom, not only someone's grandkid, anymore.

O.K., we just would like to start seeing you take that first step. Pleas you ;have the strength to start turning some of this around. Seek appropriate help, soon.

Courage!
Hugs,
Much Love & Light! Margeaux

So yesterday, I met with my friend Ms. Santa with all the gifts.
I didn't get anything for her, but did treat her out to breakfast, by the coast.
So when we came back to my place, it was a big production on her part.
She came in wit h two bags. One for my husband, this time, and one for me.
She gave me (as usual) 5 pair of leggings, and sweater dress, then a nice soft
blanket. She and her mate gave my husband a nice winter shirt! She kept reminding me how much she enjoys the gift giving! Finally, I just told her.........I
hated to have to look for gifts for people.

Later, after she left, I was going to call her and thank her for everything, however she beat me to it. Again, she said she was calling, because she wanted to make sure we "liked," our gifts. Oh boy! She gives them to us, and believe me I am thankful, but why do we have to keep congratulating, and being over the top thankful to her? I am going to send her a thank you email today.
But, I'm so glad this part of the year is past us.

Much Love & Light! Margeaux

Margeaux, I don't mean to be harsh about such a generous person, but… is she a bit nuts?! She does sound at least a little bit fixated on all this, wouldn't you say? I'm not surprised it makes you uncomfortable. I wouldn't know how to respond to that phone call checking that you liked them (?!?) - couldn't she wait for the polite little thank you note?

Countrymouse,

Your're not being harsh whatsoever! She's over the top with this, really!!!!
My cousin may he rest in peace would of called it, "she needs lot's of applause."
She has some major self esteem issues, but she's also very over bearing.

Much Love & Light! Margeaux

Brinoz - you have to tell yourself that you are strong enough to get the job done. Life is nothing but change. Yes, keep seeing the counsellor. Being resilient is a critical skill for caregivers of any stripe. There will be more changes and tests of strength to come, so this is just practice for them.

You are doing what a lot of people won't - you are taking positive action.
We see an awful lot of people who come through here who won't take action for all kinds of reasons. Things spiral down into crisis that forces choices nobody wants to pick. You are doing the job of a good child by taking action for mom's benefit & well being.

You might be surprised at her improvement once she is in care. I saw my mom's physical wellbeing improve in ways neither one of us expected simply from regular food, regulated meds, PT, and interaction with a few people every day. It didn't stop her mental decline unfortunately, but that's dementia.

Take deep breaths, it's going to be OK. I promise. This is all just a necessary step toward OK. Your mom is going to be OK and so will you.

There will be this weird thing that happens after mom is moved in and settled. You'll feel an absence of stress and anxiety and it will seem wrong. It's not wrong. Let the negative go and let it stay gone. This new weird feeling is peace and it's a good thing. It's very healthy for you. I had to learn how to be at peace. It was so tempting to relive the old stress I had normalized. It wasn't all a bed of perfect roses, but my stress levels sure did change. As my mom has progressed from low to high care levels, my stress levels have gone down each time. She is getting the best care of her life right now. Care I could not provide myself, in my home or hers.

I send you wishes for peace, serenity, comfort, and contentment while you are in this transition phase.