dagokid When my Mom became a widow at 55 I thought that I would be her "best friend" and even though I always did before-I began to take her "everywhere" I went (except work) and I mean everywhere. Then when I was 45 and became a widow we started to do even more things together. She began to show signs of demensia at 81 (she is 84 soon and has alzheimers now and in a nursing home) and I am "SO VERY HAPPY" that I was able to always be there for her. Shopping, doctor appointments, dinners out, visiting family and friends...you name it! So now, I have a great feeling in my heart that I can hold onto forever :)
Jun 24, 2012, 3:07 PM EDT
Jun 24, 2012, 3:07 PM EDT
wazzysrobin My last career choice before going on disability was working with the developmentally disabled adults in our town it all ended too soon only five years before getting hurt in a fall. the amount of training and variety though has carried me in my new relationship more than it ever did in the job. Had anyone ever once said you will finish your life head over heels in love with an alcoholic. I would of called them a dreamer or worse bald faced liar . but it seems that my career in caregiving since age 19 has all come to benefit the last years of my life . This guy does not make loving him or living with him easy. I see his memory slipping away and wonder how long til he does not remember who I am or who he is . I might dread it but I have worn that hat for a stranger so it is not new. I brain storm on how to prepare for when things change and it helps. Love does not see any wrong in the subject of its focus ...ever notice that? while this man is still functioning and appears sound my family and friends would all have me bail on him. I have no one who gets that even the unlovable deserve love. knowing that the hardest love I will ever know is this one. Loving someone who can never stop disappointing me. I go into each new day and love him as is. all those hours of training in different diseases and behaviors are my back bone today. And pray could not face a new day without it.Prayer has made the difference in my life. anything that comes no matter how awful becomes only a moment in time to catch my breath see day light and push on. Alcohol is clearly the most evil and demanding other woman that will ever exist. god bless all the caregivers . Not just anyone can do it . Peace of mind to all of us.
Jun 17, 2012, 12:42 PM EDT
Jun 17, 2012, 12:42 PM EDT
NUJMV65 Hi wazzysrobin, Your commitment to caregiving is so honorable. As a lifelong caregiver, nurse and family caregiver, I understand your position. You are doing what feels right for your life. Your family/friends may not understand, but I hope they are supportive of your decision. You are an exceptional person. Please be sure to care for yourself as well and listen to your mind and body when it tells you you need a break. Jane
Jun 20, 2012, 10:33 AM EDT
Jun 20, 2012, 10:33 AM EDT
wazzysrobin My last career choice before going on disability was working with the developmentally disabled adults in our town it all ended too soon only five years before getting hurt in a fall. the amount of training and variety though has carried me in my new relationship more than it ever did in the job. Had anyone ever once said you will finish your life head over heels in love with an alcoholic. I would of called them a dreamer or worse bald faced liar . but it seems that my career in caregiving since age 19 has all come to benefit the last years of my life . This guy does not make loving him or living with him easy. I see his memory slipping away and wonder how long til he does not remember who I am or who he is . I might dread it but I have worn that hat for a stranger so it is not new. I brain storm on how to prepare for when things change and it helps. Love does not see any wrong in the subject of its focus ...ever notice that? while this man is still functioning and appears sound my family and friends would all have me bail on him. I have no one who gets that even the unlovable deserve love. knowing that the hardest love I will ever know is this one. Loving someone who can never stop disappointing me. I go into each new day and love him as is. all those hours of training in different diseases and behaviors are my back bone today. And pray could not face a new day without it.Prayer has made the difference in my life. anything that comes no matter how awful becomes only a moment in time to catch my breath see day light and push on. Alcohol is clearly the most evil and demanding other woman that will ever exist. god bless all the caregivers . Not just anyone can do it . Peace of mind to all of us.
Jun 17, 2012, 12:42 PM EDT
Jun 17, 2012, 12:42 PM EDT
Saintpat for Bill K, that's just a wonderful group you've contacted. Another source here where I live is called The Peregrine Society, and they give equipment and assistance to cancer victimes too. It's affiliated with the Catholic Church, but I know they serve people of all faiths too.
Mar 26, 2012, 10:58 AM EDT
Mar 26, 2012, 10:58 AM EDT
wdkarabinus Thank you Sainpat do you have contact info for them? you can send it to me at: wdkarabinus@catholic.org
Mar 26, 2012, 11:02 AM EDT
Mar 26, 2012, 11:02 AM EDT
wdkarabinus I have been struggling with cancer for over a year now and I have no caregiver. I contacted PALS and was given a phone number that changed my life. "Cancer Care" is a wonderful group of people who will work with you on any cancer related issue. I am now receiving counseling and group support and my life is so much better. Their number is (800) 813-4673 and they will do their best to help you on your journey. Bill K.
Mar 26, 2012, 9:59 AM EDT
Mar 26, 2012, 9:59 AM EDT
NUJMV65 I cannot agree more with you, David. Without my Alzheimer support group, I would not have been able to make many of the challenging decisions I made during my husband's illness. It has been a year since his passing and I am confident that I did all I could to care for him while caring for my own needs. I am healthy both physically and emotionally because of all I learned and applied to living life.
Jan 25, 2012, 9:32 AM EST
Jan 25, 2012, 9:32 AM EST
DesktopDavid Jane, I urge people on this conversation to search out Well Spouse. Their strength is that they are an organization OF Caregivers - FOR Caregivers. Monthly, local meetings... year-round regional respites - for both current and past caregivers... and an annual conference: are all about the realities of caregiving. I am grateful for this group; as it has helped my wife live an honest, guilt-free life... and has helped Robbi and I to communicate honestly about my condition, and how it affects our marriage, and outside relationships. When I read the stories of loneliness, guilt, and resent, by caregivers, I sense that they may benefit from this type of support. They deserve it.
Jan 24, 2012, 10:48 AM EST
Jan 24, 2012, 10:48 AM EST
NUJMV65 Thankyou, DesktopDavid for sharing. I hope your message gets to all who need support. And, I wish you and your wife the best. Jane
Jan 24, 2012, 10:21 AM EST
Jan 24, 2012, 10:21 AM EST
DesktopDavid I am a male, 57, with systemic scleroderma. My wife, Robbi, is a support group organizer for the national group - The Well Spouse Association, www.wellspouse.org On that site you may find a group that is local to you. This organisation focuses on the needs of the caregiver. There motto is: "When 1 is ill, 2 need help." I can only speak for the benefits that this group's resources have shared with my wife; and best friend.
Jan 24, 2012, 9:43 AM EST
Jan 24, 2012, 9:43 AM EST
bloomforcoach DesktopDavid, thank you for sharing. Such a great motto. Sending warm wishes to you and your wife for the great work and messages that you are sharing! Energetically yours, Michael
Jan 24, 2012, 10:32 AM EST
Jan 24, 2012, 10:32 AM EST
NUJMV65 Welcome bloomforcoach. Caring for a loved one is, as you know,emotionally draining. Seeking support and reaching out to other caregivers is a healthy way to live thru this experience.Let me know if you have a specific area that is troublesome. For me the biggest challenge was feeling so alone in the evenings. I cared for my husband for 10 years and the last year he was at home he was unable to speak but required constant supervision due to dementia. My coping skills were tested to their limit many evenings. I did hire a sitter a few evenings a week so I could get out and socialize.
Jan 4, 2012, 9:38 AM EST
Jan 4, 2012, 9:38 AM EST
bloomforcoach Hello Caregiver Forum Members! I am a brand new member of this site and live in caregiver for my frail, elderly mother. I also served as a caregiver for my father during his end of life journey through heart failure and dementia in 2009. During the past several months, I have dedicated myself to coach training so I can support other caregivers and caregiver support organizations while meeting my mothers support needs. I am pleased to meet you all as we have a common bond of giving so much of ourselves for the benefit of others. If you wish to learn more about me, I was recently interviewed for a iThrive telesummit for cancer survivors and caregivers. The link to access the interview is http://bit.ly/v4ih0w. I look forward to learning more about all of your stories. Happy Holidays everyone!
Dec 15, 2011, 10:18 AM EST
Dec 15, 2011, 10:18 AM EST
NUJMV65 This is my first holiday season without my husband of 48 years. I cared for him for 10 years during his struggles with Alzheimer's. As his disease progressed, I had to change my expectations of everyday living as well as holiday celebrations with our family. There was so much sadness as I recognized the need for stepping away from some traditions and finding good ways to celebrate. I attended some parties alone recognizing that at some point I would always be alone. I skipped some things and reduced shopping for my 3 children, their spouses and my 8 grandchildren. I made some celebrations for just my husband and me. My Alzheimer's support group was very helpful with suggestions of self care. Unless a caregiver steps back and takes time for self care she/he will feel more severe effects when the loved one is gone. I look forward to a different kind of holiday season this year.
Dec 8, 2011, 9:45 AM EST
Dec 8, 2011, 9:45 AM EST
bloomforcoach @NUJMV65 I am sorry for your loss. You provide some good insight and kudos to you for looking forward to a different kind of holiday season.
Dec 15, 2011, 10:09 AM EST
Dec 15, 2011, 10:09 AM EST
NUJMV65 This is my first holiday season without my husband of 48 years. I cared for him for 10 years during his struggles with Alzheimer's. As his disease progressed, I had to change my expectations of everyday living as well as holiday celebrations with our family. There was so much sadness as I recognized the need for stepping away from some traditions and finding good ways to celebrate. I attended some parties alone recognizing that at some point I would always be alone. I skipped some things and reduced shopping for my 3 children, their spouses and my 8 grandchildren. I made some celebrations for just my husband and me. My Alzheimer's support group was very helpful with suggestions of self care. Unless a caregiver steps back and takes time for self care she/he will feel more severe effects when the loved one is gone. I look forward to a different kind of holiday season this year.
Dec 8, 2011, 9:45 AM EST
Dec 8, 2011, 9:45 AM EST
NUJMV65 This is my first holiday season without my husband of 48 years. I cared for him for 10 years during his struggles with Alzheimer's. As his disease progressed, I had to change my expectations of everyday living as well as holiday celebrations with our family. There was so much sadness as I recognized the need for stepping away from some traditions and finding good ways to celebrate. I attended some parties alone recognizing that at some point I would always be alone. I skipped some things and reduced shopping for my 3 children, their spouses and my 8 grandchildren. I made some celebrations for just my husband and me. My Alzheimer's support group was very helpful with suggestions of self care. Unless a caregiver steps back and takes time for self care she/he will feel more severe effects when the loved one is gone. I look forward to a different kind of holiday season this year.
Dec 8, 2011, 9:44 AM EST
Dec 8, 2011, 9:44 AM EST
Saintpat May I post a second time? I wanted to mention that a brilliant psychiatrist in New York suddenly became a caregiver for his wife. He wrote a brilliant essay saying that caregiving was exactly like the post-traumatic disorder cases he treated. He had no answers or formula; but he did say the curative power for post-traumatic sufferers as well as caregivers is knowing, absolutely knowing, that you DO have choices.I looked in the mirror every morning and said, "I have choices today and every day."
Dec 6, 2011, 8:35 PM EST
Dec 6, 2011, 8:35 PM EST
Saintpat This is my first Christmas as a widow, after my husband died in July. I was his caregiver for 20 years; 11 years full-time; he had progressive, disabling muscular dystrophy. I cared for him because he was such a good man, so sweet and loving, and I loved him dearly too. I wanted to do everything I could to keep Rick at home. I wanted to say proudly, "I fought the good fight; I finished the race." Nevertheless, the most important thing I learned as a caregiver is that human sacrifice does NOT make the sun rise. It's your own self-care, healthy selfishness, and refusal to be disabled by caregiving that makes the sun rise. You're going to have to be tougher than you are now to get this done. Hit up your kids (or sell your jewelry) to pay for housecleaning, personal care aides a few days a week, and get out to book clubs, rent movies, have lunch, volunteer at a cheerful place, surf the Net, grow things, sit in the sun, and don't take one second of abuse from anybody about anything you decide or do. No one has legitimate claim to your life and health. WHEN ONE IS ILL TWO, REPEAT TWO, NEED CARE. If you had a broken leg, you'd know what to do and how to act. Well, caregiving IS having a broken leg, and you have to call 911. In all my 20 years of caregiving, loving and sincere people would say, "How's Rick doing?" No one ever said, not once, "Pat, how are YOU doing as a caregiver." That should tell you something about the need for self-care. This is the question for all your tasks. Does this have to be done.......?....by me.....? at this time......? and in this way? There is just not much that passes all 4 parts to that question. Think about it; pray about it. Let me help if I can; I'd like you to all know what I've learned, without my pain in learning it.
Dec 6, 2011, 8:26 PM EST
Dec 6, 2011, 8:26 PM EST
NUJMV65 Dear lovestoread: Caring for a parent can be very challenging, particularly long distance. You might start by discussing your concerns with your father. Listen to his feedback. If he is of sound mind, his decisions should be respected. You might contact the nursing home on a regular basis. Get the name of the charge nurse and contact her directly to get updates regarding your mother's status. This way you can establish a relationship and be reassured when you cannot visit in person. Please let me know if this is helpful. Jane/ nujmv65
Apr 20, 2011, 5:28 AM EDT
Apr 20, 2011, 5:28 AM EDT
LovesToRead I need help, I am running into issues with both of my parents, my mother is 83 and father is 90 but it is my mother who is in very bad shape. She has dementia and has been going downhill for some time now. My father has sent her to a nursing home and does not visit often, I live an hour way and have a young child just starting school. I visit once a week, and find the nursing home depressing. We take lunch up and sit with her, take her for walks and do the best I can. I would like to have her come live closer to me there are a few nursing homes less than 5 miles from my home, but my father will not let me move her yet he does not go often to visit. How do I handle this?
Apr 19, 2011, 10:11 PM EDT
Apr 19, 2011, 10:11 PM EDT
NUJMV65 Reading your story nanadiana brings to light the importance of setting up legal and medical protection as well as self care. Up until my 69 year old husband's death on January 18, 2011, I was a caregiver. He had Alzheimer's Disease for 10 years. I was advised early on to establish POA, etc. and this action saved me a great deal of stress in an overwhelmingly stressful time. You described your current relationship so well. I feel my role was just that. I am feeling great relief as well as some sadness at my husband's passing. May God Bless You as you travel your journey. Continue to maintain your self care and social contacts they will be your salvation. Jane/nujmv65
Feb 20, 2011, 4:52 AM EST
Feb 20, 2011, 4:52 AM EST
Jo-Anne Dear Jane: Please know how saddened we all are to learn of your loss. You were so caring and strong for so long. We all have a lot to learn from the wisdom you've acquired during your difficult 10 year journey. Your willingness to share your thoughts with us, as you do, is deeply appreciated.
Feb 28, 2011, 10:53 PM EST
Feb 28, 2011, 10:53 PM EST
nanadiana On November 19, 2010 my husband had a near fatal traumatic brain injury as the result of a fall. He is physically doing better and better day by day but he is no longer the man I married. I am not a wife, nor partner, nor his lover...I am his caregiver and nurse. It hurts like the dickens but as the vows go...in sickness and in health, for better or worse, they still mean the same thing 37 years later. Here are a few tips to bear in mind in the event of such a tragedy...thankfully, working in the medical industry for 36 years I had the foresight to do these things before we ever thought they would be necessary. 1) Get a Power of Attorney both for financial and legal matters and a Medical Power of Attorney for making crucial decisions. You can name anyone you want to be your respresentative and you can change them at anytime as long as you are of sound mind. 2) If you have Medicare get a form called a "Representative Payee" this will allow your respresentative the right to question bills, payments and charges. A Power of Attorney does NOT hold up with Medicare. 3) Assign someone to be your advocate with all your physicians. If they have you sign a HIPPA or Privacy form, inform them that your spouse, child, partner, friend, etc. will also be allowed to call in and obtain lab results, speak with your doctor or just be kept in the loop in the even that you have a serious illness. 4) After steps number 1-3 are in place, NEVER be afraid to question a physician's decision, never be afraid to fire a physician if the patient cannot speak for themselves. Last but not least...take notes, take names, write down dates and times. Medical professionals seem to tow the line a little better when they know you are paying attention. Be a squeaky wheel.... I am now what is refrred to as a married widow, but this is God's decision. I am learning day by day that I have to get out of the house, even for a just an hour, to keep my sanity. I am only 54, my husband is 69....I lan on living a long life, I do not want to be a worn out hag at 54. Always take care of yourself first, you are no good to the person who needs you if you are about to keel over also.
Feb 19, 2011, 11:46 PM EST
Feb 19, 2011, 11:46 PM EST
kathyc I am also a caregiver to my husband, although he is fully functioning at this time. I appreciate all this good info that yu posted. I will be sure and get these forms in order. Thank you for sharing.
May 21, 2011, 9:49 AM EDT
May 21, 2011, 9:49 AM EDT
Think2011 Hello, Sailinggirl49! I agree with the Noderator, most definitely contact Alzheimer's Assn - they have free materials & classes that are truly wonderful. With her altered thinking, she might reject Meals On Wheels or your doing cooking for her, but sometimes it works if you just "show up" around lunch or dinnertime with the meals. ("Oh, Mom, I had some leftovers from dinner last night that I thought you might enjoy," etc., instead of mentioning that she "can't" prepare a meal by herself.) If your mother has a physician (such as a geriatrician, internist, GP, neurologist specializing in dementia) she is comfortable seeing and is willing to go, please take her to the doctor for evaluation and recommendations, staying with her in the room during the exam (if her memory is failing, she may not be able to recall what the doctor said if on her own.) It can be important for you to have your mother sign a Medical Power of Attorney for you if she has not already done so. Without this, at some point, you may have to pursue a guardianship. If she has no doctor, there may be home health agencies in your area that can send an RN or doctor to the home for a house call if she is willing. Alz's Assn may have a list of physicians, home health agencies and nursing homes in your area that serve dementia patients. Depending upon your mother's diagnosis, there may be some medical services and/or assistance with "activities of daily living" covered by Medicare and/or Medicaid that she might be eligible for. Your local adult protective services folks are another good resource for anyone concerned about an older loved one who is struggling at home on their own - they can visit the home and evaluate the situation. You may also need to help her with things like bill paying if you have not had to do so already. I would also alert the management at the retirement community that you have noticed some problems if you have not already done so; they may also have some good suggestions on resources for you. Best of luck and take care! I know how hard this is. My mother has Alzheimer's and refused any medical attention; she is now in a nursing home with a good memory care unit, but only after having had the police take her to a psychiatric hospital after an episode of severe confusion and wandering.
Feb 10, 2011, 11:26 PM EST
Feb 10, 2011, 11:26 PM EST
nanadiana Additionally, as far as a Power of Attorney goes, also get a form from Medicare so that you can become a "Representative Payee", A POA has no standing in the Medicare system. Gratefully my I obtained all Powers of Attoreny and a Rep Payee form when my husband turned 65 since Medical Billing is my career. It was a God send when in November 2010 he had an almost fatal accident that required brain surgery and I am handling all matters legal and medical as well as being a full time caregiver. It is a hard task, but I suggest anyone who reaches Medicare age assign a Rep Payee form just in case of emergencies such as this. All adults in our age group should have a Medical Power of Attorney, whether that person be a spouse, child, grandchild, partner or friend. Someone you can trust in the event you cannot make your own medical decisions.
Feb 19, 2011, 11:26 PM EST
Feb 19, 2011, 11:26 PM EST
NUJMV65 Hi Sailinggirl49, It is an impossible challenge to "convince" someone who has been independent and now has altered thinking to accept help. Your mother's perception and insight may not allow her to process the fact that she requires assistance. Your best approach is to offer help in a positive way. For example, if she requires help with food prep, offer two choices such as cooking a daily meal for her or having a program such a "Meals on Wheels" deliver food daily. Good sources of help are your local elder service organization or the Alzheimer's Association hot line. They help with all types of memory issues and solutions. Please let me know if I can help you with specific concerns. I am here to help you. Jane
Feb 10, 2011, 11:41 AM EST
Feb 10, 2011, 11:41 AM EST
Sailinggirl49 Hi there. My mother is almost 89 and is becoming increasingly more scattered in her thinking and actions. She lives alone in a retirement community (my dad died 2 years ago) and she refuses to let us get someone to help her. How do you convince someone that they need help?
Feb 8, 2011, 9:44 PM EST
Feb 8, 2011, 9:44 PM EST
coyote_04057 Hi! I'm Linda and I'm new to the web site. My nearly 19-year-old grandson has been living with my husband(step-grandfather)and me temporarily. My grandson has been receiving treatment for mental illness since he was 10(initial diagnoses were ADHD; and anxiety). Bipolar disease and insomnia have been added to it. He has been referred for case management services and one immediate goal is other housing options. I'd love to hear from others who provide care to grandchildren!
Dec 6, 2010, 10:15 AM EST
Dec 6, 2010, 10:15 AM EST
NUJMV65 Hi Linda, You certainly have a challenging situation. Have you searched for any support groups in your area? Often community hospitals or senior centers offer this type of support. Also you might contact your local elder services. Please keep in touch. Jane
Dec 7, 2010, 5:31 AM EST
Dec 7, 2010, 5:31 AM EST
coyote_04057 Thanks, Jane, for your input! My online research did lead to the info that I can contact the local Area Agency on Aging re: support for caregiving grandparents. I will likely check into that. I was looking into the online support first...
Dec 6, 2010, 10:15 AM EST
Dec 6, 2010, 10:15 AM EST
NUJMV65 Your pain and anxiety are evident. Placing your mother in a safe and caring environment is the brave and right decision for you and for your mother. Cue cards would be wonderful. I suggest you wait til a few days before or even that day and tell her she will be living in a new and lovely home for a while. And that you want and need her to stay. Take it one day at a time. You should consult with the nursing home social worker in advance, she will be able to offer additional support during this difficult time. Jane
Aug 16, 2010, 6:26 AM EDT
Aug 16, 2010, 6:26 AM EDT
Barbrialan Thanks. I talked to the Hessco nurse today and she suggested the nursing home could offer help, too. Trying to take it moment by moment :)
Aug 17, 2010, 7:31 PM EDT
Aug 17, 2010, 7:31 PM EDT
Barbrialan I forgot that the actual reason for posting was to ask what to tell Mom. Do I tell her it will be a nursing home? Or that I think she needs that? Do I wait till the week before ....? This journey needs cue cards!
Aug 15, 2010, 10:35 PM EDT
Aug 15, 2010, 10:35 PM EDT
Barbrialan Any advice appreciated .... I've just started the process to get my mom from her home to a nursing home. She can't dial the phone, and doesn't know what the lifeline is for (she has an increasing level of dementia)--so she's clearly not safe (to me). HESSCO did a screening Friday and said she is eligible for a nursing home. I need to call them back Monday and tell them to go for it. BUT while Mom wants to leave her apartment, she doesn't want to go to a nursing home. She's been talking about moving and living with someone else, like a housemate situation. Is she crazy? Well, yes. It kills me that this is not going to be her decision, and she's not going to want the decision. When HESSCO mentioned nursing home, Mom visibly flinched. And did I mention I have a full time job? I know shooting myself isn't helpful -- but I sure wish there was a way I could magically twitch my nose and she'd be IN the nursing home and settled!
Aug 15, 2010, 5:10 PM EDT
Aug 15, 2010, 5:10 PM EDT
NUJMV65 Dear Risingspirit, You are to be applauded for your dedicated caregiving. One important thing I have learned as a caregiver and as a professional is that the caregiver's physical and emotional health does suffer if she does not nurture her own needs as well as those of the care recipient. I hope that you are caring for yourself now. If you are ever in a caregiving situation again, please enlist the help of others to partner in caregiving. It is an invaluable way to share the responsibility AND care for your needs. Jane
Aug 14, 2010, 6:19 AM EDT
Aug 14, 2010, 6:19 AM EDT
Risingspirit I was a caregiver of my maternal Grandmother for 11 years. She passed away in 2007. I took care of every need she could have possibly had, and consequently, burned out emotionally and physically and now have diabetes to contend with. My only regret is that I argued with her. I understand about the "fiblets". She was not easy to take care of, and even when I remarried, I still took care of her all by myself. Wasn't easy, but I did it because it was the right thing to do.
Aug 13, 2010, 3:37 PM EDT
Aug 13, 2010, 3:37 PM EDT
NUJMV65 Jo-Anne-I suggest checking for signs that your mother might be unsafe alone. Is she eating as usual? Is she storing food appropriatly? Is there spoiled food saved? Do you see changes in her hygeine or her housekeeping? Is she taking her medications as ordered? You want to be sublte about checking on her. I.e. count pills weekly, when she can't see you. Look in refrig for spoiled food, but don't tell her what you are looking for. Therapeutic lying or "fiblets"help save an elder's pride. Jane
Aug 6, 2010, 7:42 AM EDT
Aug 6, 2010, 7:42 AM EDT
Jo-Anne Thanks for your suggestions, Jane. Your fiblets concept is a great one. I've been observing her pills when I go there each week - she's taking them randomly - not consistently. Frequently food is not stored appropriately - and does spoil. I'm just not sure what the next step is. She's fiercely independent. In addition, her apartment is an absolute disaster - so she doesn't want to let anyone into it. Where oh where to start.
Aug 6, 2010, 12:50 PM EDT
Aug 6, 2010, 12:50 PM EDT
Jo-Anne Am getting a bit concerned. My aging mother is becoming somewhat "forgetful." She lives alone - and I think she prefers it that way. Yet I worry about her safety.
Aug 5, 2010, 9:38 PM EDT
Aug 5, 2010, 9:38 PM EDT
roaddog Thank you for your suggestions. My Mom has been ok the past few days but my other Mom (my husbands ) fell at the assisted living and has required some extra attention. Seems like it never stops. My M-I-L is really going down quickly. Also awaiting word on possible bone marrow transplant for my husband brother. And to make it sound more like a bad country song my son lost his job and he and his wife are expecting baby # 4. Oh well the cars are running great! Thanks again. I will be checking back as I have other topics I would like to discuss.......particulary my moms interferring siblings.
Jul 8, 2010, 9:13 PM EDT
Jul 8, 2010, 9:13 PM EDT
Jo-Anne Roaddog - when you get on a plane, one of the first thing the steward/ess tells you is that if you're flying with children - and the oxygen mask drops down, make sure to put the oxygen mask on yourself, first - and THEN put it on your kids. If you're not getting the "oxygen" - then you won't be any good to anyone! Jane's advice below is excellent! Take care of yourself, both you and your husband! If you don't get enough of life's "oxygen" (vacation, rest, time away, etc) then you won't be able to support the others in your life.
Jul 7, 2010, 6:01 PM EDT
Jul 7, 2010, 6:01 PM EDT
NUJMV65 As an experienced caregiver of my mother-in-law and my mother who are both now deceased, and my 68 year old husband who now lives in a nursing facility.I can empathize with your situation. My best advice is to allow the people at the assisted living to do as much as they can to help both you and your husband with caregiving so that you have time for each other. You need to live your lives and not put them on hold. You may consider family leave for both of you so you can care for your selves. Jane
Jul 6, 2010, 9:27 AM EDT
Jul 6, 2010, 9:27 AM EDT
roaddog My husband and I are 56 and 55. We are the primary caregivers of our moms who are 83 and 75. Thay both suffer from dementia and luckily live in the same assisted living facility. My dad is deceased and my husbands parent are divorced. I have no siblings and my husband has one brother who is currently under care for cancer and has a poor prognosis. We are both health care professionals. I work fulltime. My husband has a demanding carear that reqires long hours and frequent overtime. When this happens I assume primary care for both moms. I also have RA which causes chronic pain and fatigue. Personally I am overwhelemed. I know we are not alone. I am interested in the opportunity to vent and comments from others in simular situations. Thank you.
Jul 5, 2010, 3:23 PM EDT
Jul 5, 2010, 3:23 PM EDT
Barbrialan In more cheerful news -- it's hard to know what to do while we waiting at doctors. I used to do crosswords with mom but it broke my heart to hear her not get simple clues ... So yesterday I took a mandala coloring book, a set of twistable colored pencils, and tore out a page for her and one for me. The coloring passed the time and she was able to do it! It's rare when I can find something she can still do.
Jun 23, 2010, 7:42 PM EDT
Jun 23, 2010, 7:42 PM EDT
Jo-Anne What a great idea! How creative. You know, years ago, she probably did the same thing for you. Interesting, isn't it, how unexpectedly time changes the nature of our relationships.
Jun 26, 2010, 9:17 PM EDT
Jun 26, 2010, 9:17 PM EDT
Babs I think its so hard to figure out when is the right time to make a change. All I know is that I'd rather be safe than sorry. It sounds like you're doing the right thing by interviewing and being so smart about all that you're observing. I'm sorry that this process is so sad.... my experience with my dad was that it was just loss after loss...althought I'm not sure how aware he was of the loss. He was in a lot of pain, so ironically, I was grateful that he had memoroy loss in the hopes that he'd forget how pained he was. Even though my mom didn't want us ever to put either of them in a nursing home, I was so relieved to see her able to see why it DOES become necessary, as she realized with my dad. Hopefully, your mom would understand the difficulty about your decision if she was in your shoes. Good luck. Babs
Jun 20, 2010, 10:28 PM EDT
Jun 20, 2010, 10:28 PM EDT
Barbrialan I pray for guidance. Mom is more subtle. I'm pretty sure she's not eating well (I can have meals delivered but I can't stand there); her dressing and hygiene are deteriorating; her time sense is getting confused. I feel like if she notches down just a little bit more, she should not be living alone.
Jun 20, 2010, 8:27 PM EDT
Jun 20, 2010, 8:27 PM EDT
NUJMV65 HESSCO will be able to help you determine safety issues and some solutions. Making these decisions about your mother can be challenging. I know our family did not want to see our mother's limitations due to her dementia. When my brother and I found her on the floor in her apartment we realized she could no longer live alone. We could not help but feel guilty, but our hearts knew she needed more help than we could provide. Jane
Jun 20, 2010, 7:33 AM EDT
Jun 20, 2010, 7:33 AM EDT
Jo-Anne I remember so clearly the moment when I knew my dad was no longer "safe" - that his dementia was the master. Interestingly, a lot of things sort of "fell into place." Once I was able to move beyond the shock, the pain, and the guilt, I was able to take the kind of action you would do for any loved one who was in trouble. And eventually the guilt and pain was replaced with relief.
Jun 20, 2010, 7:09 PM EDT
Jun 20, 2010, 7:09 PM EDT
NUJMV65 I am sure Barbrialan that you will not only miss your mother, but will realize how much you did for her out of love. Are you planning to move your mother to a nursing home soon? Jane
Jun 19, 2010, 6:40 AM EDT
Jun 19, 2010, 6:40 AM EDT
Barbrialan So I've been told. Even I have trouble feeling guilty about what I don't do. I would be a little surprised if Mom is still home for Christmas, but I said that last year, too. I honestly don't know. I'm going to call Hessco for guidance. I just don't know how you decide when she's "safe" so that's not the issue.
Jun 19, 2010, 6:05 PM EDT
Jun 19, 2010, 6:05 PM EDT
Barbrialan PS - in a glimmer of brightness -- I did my last nursing home interview yesterday. The admissions director said she was proud of me for having several pages of questions. Hee. Making lists is one of my coping mechanisms.
Jun 18, 2010, 11:23 PM EDT
Jun 18, 2010, 11:23 PM EDT
Barbrialan I find myself compensating for my Mom in a dozen different ways. I don't really see what I'm doing until someone points it out. Sometimes I wonder what it will feel like when she is gone and I'm only functioning for myself.
Jun 18, 2010, 11:19 PM EDT
Jun 18, 2010, 11:19 PM EDT
NUJMV65 Jo-Anne, Your realization that your father had not only forgotten how to write his name, but how to use the pen must have been devastating. You considered his feelings by helping him do the writing and not taking over the task. Jane
Jun 17, 2010, 7:19 AM EDT
Jun 17, 2010, 7:19 AM EDT
Jo-Anne Barbrialan - this sounds heart-wrenching - especially since your mother has dementia. Are you "in this" alone? Do you have any siblings who are able to help you to at least think this through?
Jun 13, 2010, 1:14 AM EDT
Jun 13, 2010, 1:14 AM EDT
Jo-Anne Your story about your mother "forgetting" how to sign her name brings back a poignant memory of me with my dad. A fellow came to my father's apartment to deliver a very high-end electric wheelchair - and he needed my dad to sign for it. Dad went completely blank and then started to become agitated. I sensed that things were going to go downhill very, very quickly. So, I grabbed a pen out of my purse, put it in my father's hand, and then, cupped my hand over his, helping him to form the letters (which, of course, he could not remember). The delivery guy was horrified. After he left, I quickly realized that this wonderful wheelchair was a tool that sadly Dad would never, ever be able to use.
Jun 16, 2010, 9:49 PM EDT
Jun 16, 2010, 9:49 PM EDT
Barbrialan My husband is up for sainthood and my brother is supportive, tho not often present. I have a sort of crazy-quilt of people who can be supportive. The hardest part is watching her vanish neuron by neuron (and she's considered "high functioning" in the bizarro land of dementia). Yesterday my brother and I watched her forget how to sign her name, or spell it. Then it came back to her -- still, pretty creep.
Jun 14, 2010, 9:07 AM EDT
Jun 14, 2010, 9:07 AM EDT
Barbrialan "Pushing a boulder up a mountainside" is a good metaphor, tho somedays I think the boulder has run me right over. My mom is 93, lives alone in a small apt, has dementia and is getting worse. I have started looking at nursing homes and it's just heartbreaking.
Jun 12, 2010, 5:56 PM EDT
Jun 12, 2010, 5:56 PM EDT
NUJMV65 Add: Yesterday I visited my 68 year old husband in his current home, an Alzheimer's Care Center. I helped him with his lunch, took a drive with him for ice cream and shared his bed for a nap. Because of his disease, I watch for his mood and plan what we do accordingly. I feel we share our love in a special way that is comfortable for both of us. Jane
Jun 8, 2010, 7:37 AM EDT
Jun 8, 2010, 7:37 AM EDT
Barbrialan I love the napping together! It's hard to lose the physical contact.
Jun 14, 2010, 9:05 AM EDT
Jun 14, 2010, 9:05 AM EDT
NUJMV65 I'd like to hear from other caregivers and how they are coping with their role. Jane
Jun 8, 2010, 7:29 AM EDT
Jun 8, 2010, 7:29 AM EDT
Jo-Anne I spend a full day each week with my aging mother. It's more time than I can afford - and I can feel guilty about not getting other stuff done. Meanwhile, my giving her a full day a week is not nearly enough for what she really needs. Again, the guilt. I do her bills, wash some clothes, do the shopping, take her to the hairdresser and dr. appointments, prepare the paperwork for the taxes - pretty much lots of different tedious stuff. But probably the single most important thing I do is listen. Just listen.
Apr 19, 2010, 4:53 PM EDT
Apr 19, 2010, 4:53 PM EDT