Any caregivers here, while trying to take care of yourself too?

Discussion in 'Fibromyalgia Main Forum' started by Kacjac, Feb 12, 2006.

  1. Kacjac

    Kacjac New Member

    I noticed there are many nurses here, in Shannonsprakles thread. ( great thread, btw)
    I take care of my 88year old patient, who has vascular dementia.
    It sure isn't easy, by no stretch of the imaginatiion!
    Sometimes I don't know if I'll make it, and then by God's good grace, we've made it another day!
    I think there is one other here thats a caregiver, I thought we could share notes :)
    Hugz, Karen
  2. victoria

    victoria New Member

    my inlaws moved in last July after we evacuated them from one of the hurricanes; once we got them here, we realized they could no longer really take care of themselves - FIL will be 96 in June, MIL will be 89 in August.

    FIL is 95% cognizant at least altho physically barely ambulatory, while my MIL has I believe vascular dementia as well (many small necrotic areas on her brain MRI) and is getting shakier and quite often agitated, feeling she should be 'doing something'...

    it has turned into an almost full-time job. Thankfully we were able to hire someone to come in 35 hours/week, but we do it all the rest of the time. My DH just doesn't quite get that we cannot leave his mother alone while his Dad naps or even with his dad as his dad doesn't hear well or dozes off and doesn't pay attention to what she's doing a good part of the time.

    I'm no professional, so I'm not sure what to do to keep her busy other than minor things like folding towels;

    she was in the hospital this past week for diarrhea, the nurses were so nice at our Regional hospital, actually let her sit in their station and "sort" papers.

    I did buy a large crochet hook and some yarn so maybe she can at least play with it as she used to crochet a lot.

    Do you know of any websites that might be a source of possible activities? It is SO hard to deal with someone who has problems focusing at all. What little energy I have gained is spent on her these days it seems, altho I don't begrudge her - she was such a hard worker when she could be.

    all the best,
  3. Kacjac

    Kacjac New Member

    My hats off to you, bless your heart, you certainly have your hands full.
    Your husband is probably in a little, if not a lot denial.
    He ofcouse wants them to be the same, as they once were!
    I do not know of any activites on a website, but if you'll go to the top of this page, and click on "message boards"
    and then click on Alzheimers, you'll get a wealth of help from those folks, there!
    I do let Miss Irene fold towels, crochet, read mags and papers, her Bible, old movies, she did work some word puzzles, but not anymore, we bought her a "big pieces" jigsaw puzzle, that we are going to try out! At Christmas, she stirred cookie dough...and enjoyed it! She thought she just had the most important job, bless her little heart!
    And on a bad day, she can't do half those things mentioned,
    Take it one day at a time, so glad to here you have some help coming in!
    Blessings to you and yours, Karen
    p.S. Let me know, anytime I can be of help to you!
    [This Message was Edited on 02/12/2006]
  4. jaltair

    jaltair New Member

    Sort of. I'm a nurse - RN public health nurse (PHN), and supervise others who are actually in the field doing the work. I don't think I would really trust myself to do some of the things needed in the field, especially all paperwork to make everyone happy!

    Supervising is hard enough. I'm really having more and more difficulty with working. The fatigue and brain fog are the major problems while I'm working. My PMD did write a note to help protect my FMLA because I have frequent absences. Just trying to hold it all together, but feel like everyone is seeing me fall apart.

    No fun, is it?

    Warm hugs, Jeannette
  5. bettydroop

    bettydroop New Member

    Bless your bones.

    We used to have residents fold towels- you did that wit her I see and its a great idea.
    I may be grasping for straws here but maybe take a pile of rubber bands and paper clips and throw them together and have her sort them into two piles. You could say that its really important to you- it JUST needs to get done. They do indeed need to feel useful and productive- absolutely!

    I dont do that kind of work anymore- I did like it very much.

    When I went to massage school I wanted to work with the elderly doing Therapeutic massage for them - I got side tracked and not doing that as much anymore.

    ANYWAYZZZZZZZ - I guess I would be considered a caregiver in a way. I used to say- "The injured healer" as a nurse in your situation with FM I think you would qualify as that for sure. NURSES ARE HEALERS!

    I hope all goes well with you in all that you do.~~ GOD bless~~

    Oh I just read all posts in this thread - there are a few nurses here, thats great.
    [This Message was Edited on 02/13/2006]
  6. EllenComstock

    EllenComstock New Member

    but not on a daily basis. Both of my parents have passed away and I am guardian for my 49-year-old mentally ill brother. He doesn't live with me (lives in a group home), but I do have the responsibility for him. I have another brother who helps me sometimes, but unfortunately, he has a mental illness, too (although not as severe).

    The group home doesn't do as much care as I had hoped, so I often have to take my brother to the doctors, get things he needs like personal items. I try to spend as much time with him as I can, but he is very childlike, and when he is not doing well (he has OCD), it is exhausting for me. I often have to limit my time with him so I don't have a flare-up. I'm no good to him if I don't take care of myself.

    I used to take care of both my mother and brother to try and keep both of them in my mother's home. When I think back to all I did, no wonder my health really went downhill.

  7. Cromwell

    Cromwell New Member




  8. gumama

    gumama New Member

    My husband has Lupus and heart disease, I have cared for him the last 14yrs.. I had my 87 Yr old Mother until last week, taking care of one is hard enough but taking care of two is almost impossible. I did this with no help for one year. My Son and his family live across the street and have helped as much as possible, but both he and his wife work full time.

    My Mom finally got to the place where I couldn't lift her anymore, and her balance was getting so bad it took two of us to handle her. all of this on top of my husbands Illness almost did me in.. he had a heart attack in 2004 and had a stint put in, then got a septic infection ( the worst there is). and we almost lost him..

    He's been in and out of the hospital a lot in the last 5 months, so I always had to worry about getting someone to cover for Mom etc.. the state Help in Calif is awful, they are short handed and don't seem to care .

    We finally placed my Mom last week, she is a mile away from me, so I can go and check on her often, she needs to be fed because she's so shaky she can't do that herself, and she's getting very forgetful.. I know it was the best decision for both of us, but believe me its not easy.

    I too admire all the caregivers...

  9. janieb

    janieb New Member

    Good morning, Victoria,

    I'm 62 and have been diagnosed with fibro for over 15 years. I believe the trigger came when I had a full-time plus career, a three year old granddaughter living with us, my father in a nursing home with alzheimers, and my mother living with us, also with alzheimers.

    We were fortunate to have my daughter and her child and husband living in the other half of our home, so she was our paid daycare provider. When it came to nights and weekends, I was pretty much on my own.

    Things worked pretty well until my mother began to not sleep at night and I was up with her most of the night. Shortly after that, she stopped knowing who we were, and at that time went into the nursing home.

    I reached a point then when I couldn't stand to be touched, the pain was so bad. Medications, of course, helped a lot, but I'm currently looking for a doctor in mid-Wisconsin who will work with me on Dr. St. Armand's protocol. Haven't found one, yet, but being able to take early retirement has also help a lot.

    The problem you'll encounter if it's alzheimers, is that just when you think you have everything under control and can manage the situation, it takes a step down and you start over. There are now support groups out there for caregivers of alzheimers patients. They should help you out.

    God bless.

  10. patches25

    patches25 New Member

    I am 65 and caring for my 85 year old mother. All I can say is it is very hard. I am not having to do so much lifting lately but just even bending over to rub lotion on her causes my back to start spasming.

    I don't know how much of what my mom says is brainfog and how much could be a dementia. Sometimes I do a lot of guessing to know what she needs.

    The last hospital stay was a couple months ago with pneumonia and congestive heart failure. She made it through that and then we had nurses, PT, and OT here for a while. My mom was severely damaged from the docs putting her on a cholesterol lowering drug about 8 months ago. She has never recovered from the damage it did. It took 5 weeks of being on it before I figured out what the problem was. Three doctors and they didn't figure it out.

    I don't get out much and plan trips for groceries while she sleeps. Since I don't feel good enough to do anything I guess that is okay.

    I hope the lovely people on this board are forgiving as I don't answer very many posts. I don't have enough strength or energy to read many posts and answer even fewer. I can't tell you how many places I have bookmarked to read later about all kinds of topics and have never gotten back to.
    After just 2 answers to posts I can tell it it time for me to be back in bed. Hugs to all of you who also have this caregiving job as well as all others struggling with this DD. Evelyn
  11. victoria

    victoria New Member

    for your suggestions... I will check out the Alzheimer's board here, I'd thought it was gone actually, thank for letting me know it is still here.

    It can be difficult on a personal internal level to deal with someone who doesn't know who you are from one minute to the next, literally.

    But amazingly, I have found an incredibly deep well of patience that I didn't know I had, I don't know if the CFIDS has given this patience to me or what, but I know I didn't really have it when I was younger!

    My repeating to her the answers to re-explain over and over why she is doing something or I'm telling her to do it or where she is, etc, instead of just being bossy as I've seen so many people be, at least causes me to get a smile from her when she sees me instead of a scowl or worse, a blank look, most of the time

    So, I have gone from being "the lady who tells us what to do" to Victoria, LOL; while it's taken 6 months to get there, she has, I guesstimate, about 50% consistent recognition of me, amazingly. Just a bit less than her recognizing her son.

    I showed her some old family videos last night, she couldn't even really recognize herself I think, much less her husband or her son, sadly; was hoping it would jog her memory at least a bit for a while and give her some enjoyment.

    I commend everyone who steps up to take care of their own, and and also those who would like to but due to other demands of 'Life' unfortunately cannot.

    Like somebody said, it takes courage to get old! Especially the way our society all too often treats our elders... or forces us to.

  12. Kacjac

    Kacjac New Member

    At least I don't feel so alone!
    It really is very hard at times.
    But I kept a promise so far, I told her she would never have to go to a nursing home, I hope I can always keep it!
    I admire all the ones here that do it too!
    I hope I can keep on keepin' on!
    Blessings to all of you, Karen
  13. FMhurts

    FMhurts New Member

    sounds allot like me,
    I've had FM for 17 years. at the time I got it, I was 29 years old ,taking care of my diabled husband who was having seizures daily and couldn't be left alone,plus I had two small children pregnant with my third. while working two jobs.
    I had a vaccine reaction after my third child that set it off, I become disabaled myself. Once the reaction went into remission ,FM stayed and knocked me down.
    I struggled to take care of my kids and my husband.
    It was like a night mare.I know that the stress of taking care of him and having to keep everything going did bring on FM. Its hard being sick and taking care of someone else sick.I remember taking him to the DR. many times and feeling like I needed to be in the hospital myself.
    God only knows what struggles we go thru.
    I feel for the sick and I sure feel for the care givers, because they too are suffering.
    I've been sick 17 years, married to my disabled husband for 25 years, and raised 3 wonderful kids in spite of it all. Thanks to God for his strength.
  14. angelstarr

    angelstarr New Member

    I never quite got what it ment to belong to the "sandwich generation" in psychology until I reached this time of my life... I am a Nurse and have these damn disesases and a sick hubby who has been off work with siatica and ailing parents. and work in long term care... Bless their hearts...
    Hugs to all
  15. sleepyinlalaland

    sleepyinlalaland New Member

    .....this thread is a revelation. I used to ocassionally post on the caregiver's board, but since it has been eliminated...didn't realize Alzheimers was still there. I'm not exactly dealing with an Alzheimers patient, but may as well be as regard to patience and stamina needed.

    In order to survive my waiting period for S.S. hearing, I accepted a position as a caregiver. It would provide me with room and board and small salary. The reciprocant was supposedly "low-maitenance". I was always clear about my status (awaiting disability hearing) and that I would not necessarily stay after judgement...which was (two years later) in my favor.

    Meanwhile, I am caring for an 83 year-old-widower who is becoming increasinly needy. It is close to the blind- leading-the-blind. Keeping appointments straight (God forbid I should have any of my own!)is an on-going very stressful challenge. I feel like *I* need a keeper!

    I have given very ample notice of my departure, but I know that the knowledge of my departure (a few months hence) has caused great stress in this situation. I'm a disaster as an organizer, but I know that I am unique in that I am TRUSTED in a very well-to-do household. The burden of causing greater grief is heavy, but I am at the point is HIM (my "charge")...or...ME.

    The hardest thing is finding things of interest for him to do. From the input of the family, even the loving WIFE (deceased just before I came on board), could not figure out how to have him fill the void of his formerly demanding career.

    I don't think I'd ever teach him to crochet!.....and I'm not about to fulfill his primary desire of having another devoted wifey! Oh, I do feel conflicted about my upcoming departure. One takes up a weird family-but-NOT-family role in this situation. I'll feel bad, but I AM leaving.

    I expect I'll suffer the karma of being an annoyance in my own old-age (I'm nearly there). I've already instructed my offspring to drug-and-smother me when I start obsessing about the lint on the floor. With my luck, they'll keep me on life support. NOOO000ooooooooooo!

    Thanks for this thread, I'll have to check out the Alzheimer's board.
  16. Kacjac

    Kacjac New Member

    I got Miss Irene home now, I also have home health coming in, so what a blessing that is.
    I've been able to get proper rest now, which is wonderful.
    Not dealing with alot of pain, but I seem to have a pinched nerve, in my leg. Sometimes, it want's to gives way on me, and hurts! Oh well, could be worse.
    I'm just glad she's on the mend, but we're not out of the woods yet. I am giving her shots, to keep the blood clots away. Back to work......
    Wish you all well....
    [This Message was Edited on 03/08/2006]
  17. lillyrose33

    lillyrose33 New Member

    I am a caregiver to my 82 year old Dad who has cancer and lung disease. It has been very hard on me since I have been told I have Fibro and I also have back and leg problems. Some days you don't think you are going to make it but like Kacjac said "by the grace of God" you make it.
    My husband retired because of medical problems and then Dad got sick so we are some bunch here as one other on this site said "blind leading the blind". My Dad is a good man but he can get to you. He is in denile about all his medical problems and he is hard to handle sometimes. Just alot on my plate right now. Needed to vent.

  18. JuliannaG

    JuliannaG New Member

    I know what you are going through. I have not one but TWO mentally and physically challenged children. The oldest is 26 this year, and the younger will be 19. Both can't speak, both in diapers, both need to have everything done for them. The older boy is mobile, the younger in a wheelchair, or crawls around.

    I work half day, my husband took a voluntary retrenchment package to be able to help more. (He would have lost his job soon after anyway.)

    They attend a day centre during the week. I also have a char lady who comes in 3 days a week. I just could not cope with the washing and ironing alone. The eldest has GERD, so throws up everywhere all the time.

    Every day is a challenge, just to get through, let alone cope with FMS. Some days are easier, some a lot harder, and it has taken a HUGE toll on our marriage. If it weren't for the boys though, I don't think we would still be together. My biggest fear is what will happen to them when we get too old to take care of them. We have looked at local institutions. I can't see my boys lasting in any of them, they just aren't "home".

    Then I look at my aunt who has diabetes, with the loss of 2 toes on a foot, sores on the leg that won't heal, and bad eyesight. She is also caring for a husband who has senile dementia - she has to bath him, feed him and give him a suppositary to get his bowels to work. She also gets up almost every hour in the night when he calls for her. In between that she does all kinds of needlework, knitting, art work, makes pickles to generate extra cash.... I salute her, and everyone else who is in a similar position.
  19. whoachief

    whoachief New Member

    Wow! Thanks so much for this thread. My grandma just turned 100 years old on Feb 13 and she lives with us. Mentally she is at about 90% but physically the last 3-4 weeks she has gone downhill to about 50% - prior to that I would say she was 90% physically AT LEAST! It is VERY difficult to care for her as she CANNOT be left alone & that is my biggest challenge! I have a 15 year old, two 6 year olds & two 3 year olds to care for as well and we can't just "decide" to go to McDonald's for lunch or to the park when we want to because we can't leave her alone. I've been trying to find someone who can come "sit" with her when I need to go somewhere but so far have been unsuccessful except for the person who I talked to that wanted to charge $30 an hour!!!!! Like I can afford that!!!! Good luck to you all!!!!!
  20. lillyrose33

    lillyrose33 New Member

    God bless all of you. As you can all read we do some wonderful things with out lives even with the pain and fatigue of fibromyalgia. Taking care of our love ones and friends when we are sometimes not able to do it for ourselves shows just how much determination we all have and the will to live in spite of this disease. We are special and our day is coming for a cure.

    Love and painfree days

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