Introduction thread
 

Hi, I'm known on forums I belong to as trekker. I am a caregiver to my handicapped husband. He had a ruptured cerebral aneurysm in Oct. of 1984. As a result he is a total care quadriplegic with seizure and blood pressure disorders. He also has spasms. He is considered non-verbal but gets his message accross with grunts, groans, growls and eyeblinks. (He does the growls the best...just like a big blond bear LOL!) We live in Massachusetts in an apartment and get help from the state with insurance and aides to assist in his care. We have no children but had a cat until recently. We've also had mice, gerbils, hamsters, birds, dogs and one pet spider that hubby adopted. Hubby used to be an artist and editor of a company magazine. As a hobby he also played guitar and sang.

I love caring for him...it's what God meant for me to do. I am sleep deprived and have been for years. I also have undiagnosed ADD, and diagnosed diabetes (type 2), high B/P, and cholesterol. I am unsuccessfully trying to adjust my diet to address these issues. My hobby is butterflies. I collect things with butterflies on them, things made in the shape of butterflies and things like that.

I also help to care for my MIL who is in a nursing home nearby. Our family is small with one brother for each of us. My brother for the moment is staying with us (along with his cat) and my BIL lives in Lithuania. I am willing to chat about anything that I have written here. I have been a caregiver for 22 years, and have a reputation as being devoted, tough (especially on the medical profession, when needed) and creative on adapting items to keep hubby happy and safe. MY pc is my lifeline to friends, keeping hubbie's records and med lists in order, and for the research I do quite frequently.

hi treker
 

:) It's nice to meet you.


I'm Jo, aka Julia. I have been and still am involved in caring for my MIL. She has Alzheimer's Disease. She lived with us many years but my own health worsened and her condition worsened. Nursing home was the only option we had. Mr.Jo is right up there beside me, loving his mom even though she doesn't know him.

treker, we must make you the Queen. I can not believe you do so much for so long too. I admire you ever so much. I hope we can make this room a refuge for the weary.

Caregiving is rewarding but it is also about the hardest thing I know to deal with. I saw a post from Shotspine this a.m. and I wanted to respond, but I had a meeting to go to and when I got back I could not find it. lol

Anyway, shotspine, I thank you for the kind words and I also admire you for the days of your life you freely gave to being a loving caregiver;)

Thank you DocJohn, you are about the nicest person I know, but so are the Mods that you have appointed to help us. Good Job, Doc!

Talk later trekker. Jo

well I am so washed out I don't know whether I am coming or going. you know, if we didn't laugh at things we would never make it.

When MIL still knew us she woould say or do something funny, then she would look at us and laugh. That was our OK to laugh too.

She was an angel sweet as all get out, then BAM she turned into a very strongbull fighter!! she beat the crap out of me one day, in the Nursing Home.

She went bonkers and it gets worse, then she settles out, then worse again Several of the falls I had trying to get loose from her has made things worse with my bummed up back.

Never a dull moment,eh? Jo

I

I'm purplegrrl, aka Ria. Doing what I can to care for my mother, who has frontal varient Alzheimers, severe emphasema, glaucoma and a number of other medical problems.

Even before her formal dementia diagnosis, she was assessed as needing residential aged care. A year on (and with significantly increased memory problems), she still insists she's "perfectly fit to live alone" :eek:... she'll accept a weekly cleaning lady, but has refused/sacked any other formal support services we've tried to put in.

She doesnt sack me, so...

I tried the full-time carer thing, I really tried. I just couldnt sustain it... ended up getting too sick myself (my OWN issues include hemiplegia and intractible seizures... seizures worsened by stress and fatigue).

Now, I'm back in my own flat, and mum's by herself. Call every day, and visit 1-3 days a week (to do meds, give "to do" checklists, shop, clean out dead things from frig, put out rubbish, help with shower, change sheets and clothes, help with paperwork and finances, go to dr appt... deal with any disasters I find... do as many of those things as I CAN in the time available... never enough).

Needless to say, something's got to change... eg no showers in 2 weeks isnt good enough, and mum tells me things like "I went into the frig to get my breakfast leftovers, and found all these pills on the side of the plate", and "between the bathroom and your chart, I forget if I had my eyedrops, or if I intended to". Last week, had to travel an hour to mum's house to fill up her dosette box etc... in the midst of organising a major event. And I was seizing so much that day... :eek: (took lotsa rescue meds to calm things down... but still dont know how many mistakes I made... and mum takes 15 diff meds a day).

The dosette box stuff... that's fixable. Pharmacist can do (just need to get past mum's resistance, she doesnt trust him not to make mistakes). As for the rest, tho... going to have to look at a neuropsych reassessment and guardianship again, I think. Can see ways for mum to stay at home (if that's what she really wants)... but they involve intensive in-home services. The sort mum wont accept, because she "doesnt need them" (aint lack of insight grand :rolleyes: )

Anyways... doing the best I can. Because of my own issues, never enough. And needing to find other solutions. Think that just about sums it up.

Finally!!
I am so glad to see this forum this morning.
I am an only child of divorced parents with a very ill mother. She has advanced COPD, and as of memorial day, significant brain damage which resulted in severe short term memory loss. I cant stand the thought of placing her in a home....so right now she has full time "companions" I have 4 children of my own from ages 15-1 and am trying to figure out how we can financialy keep paying for her care. I look forward to getting to know all of you,
Dandylion

Hi,

I've been raising my nephew for two years now. He's four next month and the light of my life.

I have to say that it was difficult to start over at this stage in my life. I quit my career to be a stay at home mom again after raising my two daughters.

For a while, I really grieved. Even though he was/is a joy to me, I greived my losses at the time. At this same time, my father passed away without ever meeting him.

It can still be difficult dealing with his parents, and their disabilities (mental/emotional). Many times when the beautiful, meaningful or just plain cute things happen, I cry for them. They have no clue what they're missing. They haven't even called to see how his first two weeks of preschool have gone. It hurts my heart. He wants to see them, but not often. I limit his time there to a few hours per week. It breaks my heart that I have to call them on his behalf, and then sometimes be the bad guy by saying "not today".

When he first came to me, he found security and had to be pulled from my arms to go with others...parents as well. His little mind knew that I was safe and that he felt safe with me. He's now doing much better with that and displays himself as a very secure little boy. He knows that mom will keep him as safe as possible.

This beautiful, intelligent, witty little boy is missing nothing in his little world, though. I'm mom. My hubby is papaw. Yes, you should see the looks when we're in public and he's calling me mom and him papaw.

It's less a struggle now than ever. It's as if I bore him myself. He's my life just as mine were. He's my little man.

There are days that are hard though...when my TN is acting up, or I hurt all over from Fibro and feel my age, I wonder if I'm going to be everything he needs and pray that I'm given the strength that I need.

That's my life as a caregiver for my little man...the most perfect littlest man in the world.

KD

KimmyDawn, I wrote a post to you about how proud of you for taking on your nephew. Gosh, you sound so kind and gentle, he feels safe with you. I admire you for this, but you have to be a very special person to do this.

I have more to write but so far I have not been able to "send" it goes to a page that tells tou to go to Admin. then it goes to invalad someof the other??

What am I doing wrong?? Jo

now I have no place to even write post except under my name????

(((((((((((( JoJo ))))))))))))))

I'm sorry. It was probably because you were replying to the separate thread that I'd started. I copied and pasted it here, though, because I thought it more appropriate to go into the intro thread. I then deleted the separate thread.

I'm sorry for the confusion. I'm sure that's what happened.

You shouldn't have any problems responding here.

KD

ok we'll give it a try I see no "replay" thingy except the one I'm writing on. I can't respond to anybody past you

The last "reply" thingy is the only one I can post to, you in this cass, KD before you it iwas me. only the last "reply thingy

I don't know whats wrong, but I can only post to me this time lol I am going to FF and see if I can post there

I guess i qualify as a care giver. I was vdw at "the other place". My MIL has just been diagnosed with a form of leukemia, she also has a lung infection that mimics TB. My FIL has slight dementia. They live in a retirement place which i work at. I'm an activities person in the alzheimers/ assisted living section. My MIL has been in the hospital now for almost a month so my husband an i have been taking care of my FIL. I also have a 16 yr old son with tourette syndrome, and a 13 year old daughter.
Between my job and my inlaws i'm quite busy with the elderly... :rolleyes:

Hi, I am Fee, I have Chronic Pain and I have been taking care of my Dad who is dying of end stage lung cancer, has dementia and Parkinsons. :( We have hospice here checking on him, but Mom and I are taking care of his personal hygiene, feeding and sitting with him. Its hard. He can't stand or walk anymore. So we transfer him from bed to chair. I am not supposed to lift, I can do permanant damage to myself, but I have to, he's my Dad. He only just turned 71 yrs old.

He now has become incontinent and cannot even move his bowels. He talks to passed on relatives and friends, he says they visit him at night. He is living in the past as well. This past week, he has significantly weakened, cannot speak much or won't speak at all, won't eat or drink or take any meds.

Today though, he woke up very alert which shocked me, had an appetite and requested his favorite foods.The hospice nurse just left, noticed his skin was very mottled and whispered to me, it was not a good sign. I just fed him some ice cream per his request and he was staring at me, just looking as I fed him and I saw tears. I think I know what is coming, but too afraid to acknowledge what this sudden spurt of energy is, the alertness, the no confusion at all and wanting to eat all his favorite foods, when for months he's been in his own world and for the past week, wouldn't eat or drink at all.

I am having major anxiety right now and in my heart, I am praying that maybe, just maybe he's having a good day? I've been living with my Parents since June to help out. No-one understands and I am the "Strong" one, especially for my Mom who is in denial. I haven't cried or thought about anything thats really going on with him. If I did, I would break down and not be able to care for him out of sadness. I just do what I have to for my Dad. But, I can feel the anxiety welling up inside me, I'm afraid it won't be long, I pray I'm wrong. Hospice gave us a book and he has all the signs that say, "days or hours" before they pass. I pray its wrong, I'm not ready to let him go.

Thanks for letting me share,
Fee

Feebs, I am so sorry. Yes, I would say you are a caregiver.

I went thru this with my Mom. Hospice is good, but sometimes I wished they didn't say so much, or the wrong thing.

I puzzeled over that for a long time. I think they are only trying to prepare us for the end. It's hard to even say it. My heart is very heavy for you and your family right now. My prayers are with you.

One thing with mom, she wanted to be at home. I truely didn't want this but she did so that is how we did it. As the end came, she was surrounded by her family and everything she had called home for a long time.

Maybe if you could think that your dad is with his family and that would be what he wanted. I may not be right, but if I can help, listen, please call on me, ok? my love, JoJo

Hi FeelingGoofy, welcome to the caregivers forum.

Well, I would say you were a caregiver. How on earth do you do all of that? You have to be a special person. Being Activity director is not an easy job eith.

My MIL has Alzheimer's and she is on a Nursing home. I have watched the acrivity things and they can test you. lol It is good that your inlaws are at the same place you are, makes it a bit easier to cope, but then again it can be a problem.You son and daughter need a mom and I know you are a good one, just don't burn yourself completely, ok? take care, JoJo

Ria, you are in a spot I hhhhhope I never have to beeee ever again. We had to just take MIL, she thought she was going visiting a daughter in another state. It was awful, for everybody!

Ria, you may want to post in the Alzheimer's Dementia forum. it is just down from here.I would like to talk with you again about your mom. May not be a help, but I know I have been in your shoes so to speak. WE are way past there, she doesn't know us anymore, but I may have some thing that may help you. If you want to check in the Alz.Dem. forum I will leave something so you will know its me.:) JoJo

Fee, I'm thinking of you. please let me know if I can help. JoJo

Hi I'm Donna and I'm mom to three kids, 2 which are adults now one who
is 15 that has to have 24/7 adult care. He has seizures.

ANd a 90 year old mil who lives next door, and is legally blind. She does
pretty good on her own, but will call, come over or let you know if she
wants, needs or thinks you should get her anything. She also thinks
someone should come spend the day with her as much as possible.

We have finally with the help of a list found someone different for just about
everyday of the week, to come spend two or three hours a day with her,
and one of those days usually saturday my 15 year old takes he goes and
spends a few hours with her as her companion.

I help my 21 year old get his college freshman year started off, even though
he has Voc Reh. and he has tutoring at school, he dropped out of high school,
and keeping him up and going is sometimes a full time job.

My oldest is on SSI, so just making the dollars stretch for the month as
his Rep payee is a thing that is not so easy with the prices today, he has
a 4 year old that is the sunshine in my eye.

Caregiver I am to a degree but not in the same way as many of you.

Donna

Welcome Donna
 

Well it sounds like you're a caregiver to me:) With all that you are doing, don't forget to take care of you! I hope you will feel comfortable here. For those that may not know Liz, our Moderator, she is a really nice person. She's geeod at finding things such as meds. info in them and just about everything.:)

I'm glad you came here and hope you will get the help you need. Take care and we'll talk later.

Oh yes,
forgot to say why I was hear. I have been one of my MIL's caregivers for many years. She is in a Nursing Home not but Mr. Jo and I both try to go and help out with her as much as possible. I too have neuro problems, but I will help MIL first it it is needed.

Take care of all and I hope this forum will grow.:) JoJo

Welcome to trekker
 

http://bestsmileys.com/butterfly/3.gif TC. JD

Hello Ria
 

How are things going with you? I have thought of you and still marvel at the things you do.
Being a caregiver is about the hardest job I have ever had:) It has to be for you with your own problems. How is YOUR health? Sometimes we forget we are human , especially when our patient isn't doing well.

My own health problems have worsened and I am going to have to go to a Urologist (sp?) to try finding out if I have a problem with my kidney's. I surely hope not. things are bad enough already.:eek: They did find something when I had the last MRI.

I've been wondered if you could get several people to come in on different days so you can get out, have some free time. That would be great for you.

Well, I have had all of you on my mind and I wanted to check on all of you. I hope things are improving but doubt they are. One step at a time, but sometimes that 1 step won't even behave.:rolleyes:

MIL isn't doing to good. NH called early Sunday morning, said she was sitting in the floor, now this was 5:00 a.m. The 2nd shift nurse told us she was crawling down the hall on hands and knee's. They didn't know, they just didn't want to tell hubbie.:( He was not happy at all and is still trying to find out what really did happen. As best as we could tell it didn;t appear she was hurt, but she had a very strange bruise on one of her hands. This was already there when she fell or sat down in the floor. It is very sad, She didn't want to turn my hand loose, Now she hardly says a word anymore, but she has begun to mumble a lot. Well I heard her plain as day when she asked me if I would be sure to come back,.

When we have to start being the parent and them the child, it breaks my heart. I had to do this with my own mom. She had brain cancer. I do thank God she was lucid until almost the end. Only new it about 7 months before she died. They did needless brain surgery. Maybe that helped her stay her loving self. I am so sad today. It does get to us at times.

Take care all, Jo

Same old Tamiloo...from the old board...Hello all!!
 

My husband and I have been married 5 years. He was diagnosed with Multiple Sclerosis almost 20 years ago. He is 51 and I 52. I have read your posting was wondering if anything I would say might have meaning for someone.

I was born with spina bifida. I am very fortunate and blessed that I can walk. I have only the bone formation. I do live everyday with great pain, but am able to care for myself and my family. My first husband was also very angry at my disability. I called him my fair weather friend. He loved being with me as long as I didn’t appear to be in pain. If he were to find out that I was in pain then he would leave. For 22 years I had to try and deny my body the knowledge that I loved it and that it indeed was in pain. This was very hard on me and my self-esteem. I had no love for myself.

The man I am married to now loves me and takes care of me. He is always aware of my pain and helps me through it. He will at times get into his wheel chair and get me a pain killer because he loves me. We take care of each other. I do everything in my power to make everyday his best day so far. Sometimes that means just going for a drive together or watching a sunset together or watching the news together. We know how much we mean to each other and that when we took those vows that said through sickness and health....the good the bad and the ugly...we do our best to keep them. Yes, we both get frustrated with our bodies and our restrictions, but we never get mad at the other person because of the great blessing to serve each other. Yes, I do get angry once in a while for the things that I won’t be able to experience with him because of his disability. I could list them all but the list would be too long.

I will also admit that I am thankful to a God who created us the way he did with differences. When it all becomes more than we can endure, then is when we give it to Him...he has promised us that he will pick up on the loose ends for us...through grace....remember, he didn't say it would be easy...he did say that it would be worth it!:o

Tammy,

You have an amazing attitude and a world of experience to share, both good AND bad and from both care-provider and care-receiver.

I am so glad that you shared it here for others to read and hopefully it will inspire others too.

You inspired me. Thank you. :)

Hi Tammy. it is good to see you:) Yes, you have an amazingly good attitude.
In keeping with your train of thought, helping others, may I add a little to your kindness.

You say God will help us, just lay those burdens down right at his feet and trust him. yes, & IMHO he doesn't mean for us to pick those heart aches and troubles back up.

That is the part I need to work on, when I lay things at the Lords feet ((or whom ever your highpower is)) I turn right around and pick them up again!

Yes indeed, I have to work on that one. I'm glad you are hear, I think you will enjoy this forum very much my love, Jo6

Hi I am Karen. I am 29...30 is coming like train at me:eek: . I was born with a couple of spinal deformaties that were not found till I was in my 20's. I was dx with scolosis as a kid but it went untreated, long story. So now I have 2 curves that are pretty advanced ribs on tops of each other and such, the 2 non fusions in my spine, DDD, spondalosis....not spelled right, and SI joint dysfunction. The last six months I have really lost the ability to do basic stuff and walking has become something I do in short bursts. I am grateful I can still walk at all don't get me wrong they told me I would be in a wheelchair by 20. But even though I knew it was coming I am not handling it well.

My husband Q has a SCI, paraplegic for 17 years. We have been married 6 years. He is very independent except when he has a pressure sore then I have to wait on him till he is allowed back in his chair. I do his bandage changes between home health visit also. If I was able I would go back to school to be a wound care nurse. 2004 he spend 8 months in an air bed with a wound vac..not fun. But when he is healthy he is able to help around the house and spends way to much time out in his work shed. We both use to work in the mental health field but our health problems ended that three years ago.

The first of 2005 my MIL started having hallucinations which lead to a dx of Alzhimers. She has lived with us almost 2 years. She is going down really fast here lately. She still knows us most of the time but falls a lot which has really done a number on my back even having a hoyer lift. The last month I have had someone coming in 3 days a week to give her a shower and give me a break.

That is pretty much it I guess. We have no kids, were foster parents to a teenager for about 3years when we first married. I want a family so bad I honestly have been fighting depression for the last year due to a failed international adoption. I can't have kids due to having PCOS, shouldn't even have tried with my back but ya know.
Glad to find this board.

Good Post
 

Hello,

It sounds like there are alot of us who are caregivers or who have been caregivers.
I took care of my FIL until he passed several years ago with liver failure and I took care of my Mother until she passed with pancreatic cancer almost five years ago.
I never regretted one moment of taking care of them. I think it is something that I felt honored to do. Especially, when I held each of their hands when they passed.
I miss them terribly.
I want to say that you all are angels on this earth and I am very proud of all of you.
Just don't forget to take care of yourselves in the process.
Take care,
Linda :)