[trekker]

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.

[JoJo6]

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

[JoJo6]

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

[purplegrrl]

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" ... 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... (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 )

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.

[dandylion]

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

[kimmydawn]

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

[JoJo6]

Originally Posted by purplegrrl

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" ... 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... (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 )

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.

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

[tamiloo]

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!

[hannahbanana]

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.

[JoJo6]

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