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As I look over the posts from many of you over the past year, I'm overjoyed by the support, advice, experiences and heartfelt stories you've shared with one another.
There are no easy answers, and loving someone with a disease like Alzheimer's brings with it sadness, anger, grief and uncertainly. Yet, I hope this blog has offered many of you a place to share your feelings candidly and without judgment. Often it is through the process of writing that we become aware of the surge of emotions we have locked within us. Letting go (through writing and/or journaling) helps free us from the negative impact unexpressed emotions can have.
In addition, I hope that this blog has been a place where you recognize that your experiences are shared by others who really do care and understand. Finally, I hope that a few of you felt empowered or inspired by what someone else offered through their words. Please continue to come back often in 2011, a community of support will be waiting.
Yours in Support,
"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight." — Kahlil Gibran
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I started writing poetry. It has been a wonderful release from stress and keeps my mind away from the difficulties with my husband's dementia.
Try and not feel guilty about anything you have done or not done. You are there and were there for your loved ones. Others that could have been were not.
I took care of my mother for 4.5 years without any help. My family abandoned her. I almost killed myself trying to care for her all day every day. I stayed up all night for a year and a half worrying that she would stop breathing. I would sleep from 6 am to 11 am. I stayed up with her since she could only sleep for an hour or two at a time. The rest of the family was no where to be found. They were out having fun enjoying their lives.
God loves you and knows you need help. He created you because he wanted someone just like you. Your DNA makes you different from any other human that has ever lived. God loves you every single day and He is still on the throne. Don't forget it. He does know what you are going through. You will be rewarded for all that you are doing so hang in there.
My mother suffered from dementia and Alzheimer's. When her doctor put her on fluconazole (generic for Diflucan) I noticed her dementia went away. She seemed to be in a continual drug cloud which I thought was the dementia. She was spacey and out of it.
After two weeks on fluconazole she was joking around with us. She had not done that in almost 6 years. I felt like I had woke up in the Twilight Zone but it was nice to have her back.
The doctors do not like to prescribe this drug because they have been told that it may upset liver enzymes. I had my mother's liver enzymes checked weekly and there was never any problem.
I think it is a warning from the pharmaceutical industry because it actually helps and eliminates the need for the dementia and Alzheimer's drugs that have to be taken every day until death. There is a lot more money in this every day management of disease than there is in the curing of disease.
Watch out for "disease management" doctors. There are something like 57,000 drugs and not one that actually cures a disease. That should be a giant red flag to us all!
Cynthia, I am so sad for you. I understand your challenge to a degree. I, too, cared for my husband's guardian when she was in her late seventies. She was very strong and healthy except for Alzheimers. She was a petite woman and deeply spiritual, but this disease produces odd behaviors it seems. We had to eventually place her in a nursing home because of the sudden spurts of violence (I had children at home). It was many years ago - now there is medication that can help her relax. Get it for your MIL before you get hurt. Help is available thru your county nurse also, I think. Alz is an awful disease - seems to affect people differently - no one size fits all. Caregivers must not be "victims". God bless you. You need to be able to sleep at night, in peace.
Intake care of my mother in law 78for three years now my father in law passed 3years ago I had to quit work to do this my mil treats me like her maid my husband thinks it's funny I have no help whatsoever from no one I do everything for her feed her give medications cook do laundry now at least once a week she attacks me grabs my head shakes it pulls my hair but yesterday was the worst she pushed me so hard I fell against a hot stove and hit my head on the microwave I had to go to the doctor because of an egg size bump well I hane a concussion husband sex she doesn't know what she is doing do I have to be killed before he does anything he can't be around her more than five minutes cause she bothers him so much I guess I just need to get this off my chest cause I feel so alone my own mother has told him she will sue him if anything else happens
Thank you Roberta, and Joan for your comments. This is a wonderful site to chat isn't it! I'll check to see if the network is available here in south Jersey. Right now I would welcome a "listener" !!! My husband loves to talk about his early childhood in W.Va., his years of contracting, etc. stories both true and imaginative! A young second cousin in Ohio phones him and lets him talk at length - just listens, laughs, and encourages the memories (true or untrue). I consider her an angel!!!!! She has never met him but learned about us from her mother, now deceased. When she phones unexpectedly about once a month, my heart sings! I hope to meet this sweet caring young lady someday. She is aware my husband completely forgets the conversation when they hang up but considers him (81) like a friendly Grandfather I guess! God bless anyone who has the patience to just "listen" (playing checkers is good too)
In response to Ginny's 1/27/2011 comment about not being able to find a paid companion to sit with her loved one.
I have found several wonderful companions through Elder Network and Home Instead Senior Care here in Rochester. I have someone in my home everyday for 2 to 3 hours and someone to sleep over 2 nights per week. Mom is totally bedridden and requires assistance with all activities of daily living in addition to constant reassurance for her anxiety. I don't believe she could get that one-on-one attention in either assisted living or memory care units. It works for us.
Thank you Ginny I think Namenda also worsened my mom's agitation I agree the facility needs to be constantly re-evaluated, and we as family members need to be around alot to notice changes and needs. God bless you all who are caring for your loved ones at home.
I have read Joan's recent comment. In my husband's case I discovered medications caused problems - I stopped Aricept, Namenda, and another one after just a couple days - nightmares and agitation occured and who needs that. Just plain Zoloft worked best to curb anxiety. Even that and Halidol have side effects of course, but in his case, they are working okay, and Dr. gives the lowest possible dose of each. Just think about it. I did not have any evaluation - just an ordinary cat scan and Dr. visits once every month. I care for him at home and am learning how to meet the challenges - so far. Assisted living homes are wonderful but facility must be constantly evaluated.
My mom was diagnosed with mild cognitive impairment about a year and a half ago. We moved her to assisted living as it was clear that she could not live alone anymore a year ago. She had a complete neuro-psych eval started on aricept, prozac and namenda has almost daily visits from family members and is in a caring, interactive living facility. Since early fall she seems to be steadily declining she's lost over 30 pounds (she is obese), does not seem to feel hunger, she is more and more confused and is constantly saying "I gotta get outta here" seeming to refer to her living facility but she can be anywhere when she says it, she is agitated and angry, she was started today on seroquil but not before she shoved an aide into the wall, My mom has been physical in her life it is so sad because she seems miserable for almost every waking moment. Any suggestions as to how to help someone who is so angry, confused and agitated. She also wants to "go back to bed" when ever she is not engaged in an activity. She's being followed by her primary MD and a neurologist (who recently said it is probably AD) and she will have a consult by a psychiatrist soon, also we are bringing her to a geriatric assessment center with Alzheimer's specialists
I bought several books, including "The 36 Hour Day", to help in my search for understanding dementia. Years ago it was simply called "hardening of the arteries". One book is called "What If It Is Not Alzheimers?" I call my husband's problem "vascular dementia" but lately their are signs of Alzheimers and I know I must adapt to more "new normals". Another challenge - it is not easy to find a family member or volunteer, or someone who will sit with a senior in the home and be paid for it. I am constantly being told to get out of the house more frequently without my husband. I wish!
I just found a note my mother wrote to herself at the beginning of her disease which show some awareness of her condition. She made a list of nutritional supplements, certain foods and the necessity of staying "mentally alert". Then she made a note to get more information about Alzheimers with an address.
My mother's friend told me she was amazed about the speed of my mother's decline after my father's 1998 death (Mom is 93 now). I have often wondered about the connection but am told all the time that the disease was probably already present.
I think that there must be a connection between grief and dementia but since it's not scientifically provable it's ignored.
What do I think now that my mother's had the disease for almost 13 years? That we, my 6 siblings and I should never have left my mother alone to spend half the year in Florida. I doubt it would've changed the course of her disease but she must have felt so bereft and for that I feel regret. There's got to be a better way.
My heart goes out to all of you trying to do your best for a loved one with dementia/alzheimer. Having cared for my Mom, I now realize that the general heath care profession does not understand what is involved in caring for a loved one with lets just call it 'memory difficulties'. There is so much more involved and symptoms depend on the individuals and so do calming techniques and medicines. What may work to establish some "normalcy" for one may not work for another with this terrible affliction. Our health care professional at all levels need to be educated about the terrible disease called alzheimer/dementia because they have no clue how to treat these patients to keep them safe and to preserve their dignity. Cancer and its treatment options are understood and accepted. But alzheimers/ dementia is a psychotic condition that is still not understood by the medical profession at large. Statistics indicate that this affliction will grow as the population ages, but we have a poorly educated medical profession to address the issues presented by such patients. Those patients in the the future will be you and me. It is a scary scenario especially if you have no wife, husband or child to take care of you and advocate your well being as what is still considered just "being crazy" with dementia/azheimer.I implore all of you to get the word out. The public and medical establishment needs to educated to help our loved ones today and tomorrow. What can I, a daughte
For a while I felt I was on the only one dealing with a difficult situation, it helps to know I'm not after reading other people's stories. My dad died of a heart attack 18 months ago at the age of 63, 10 days later we found out mum 62 has vasular dementia and early onset alz and could no longer live by herself. I live 3 hours away and have 2 small children a 2 year old and 5 year old. Since Dad's death mum has declined at a rapid speed within 20 months she has gone from talking, cooking some meals and driving a car to not speaking at all, unsure if she recognises us and after a fall 5 months ago which resulted in a broken hip, she is now not mobile and sleeps approx 22 hours a day with small moments of wakefulness 5 - 10 mins at a time. My last 3 visits I never saw her with her eyes open. It is heart breaking on top of that I have had to mover her as I have had numerous problems with the care facility she was in. I guess I just feel a bit stretched with 2 small children, a business, living 3 hours away and trying to do my best for mum. There I feel better now - moan over - lol. Thanks :)
When my husband began exhibiting signs of short term memory loss, accelerated by TURP surgery, I researched vascular dementia, read several books by caregivers for Alzheimers, and prepared as best I could for a long lonely ride into the twilight zone. I use the ten absolutes: Never argue - instead, agree. Never reason, - instead, distract. Never shame, - instead, distract. Never lecture, - instead, reassure, and never say "remember" - instead, just reminisce. Also - find a good doctor who will perscribe anxiety or anti-psychotic medications for your patient - never think every day will be the same - expect the unexpected. Living with a husband or parent who repeats subjects for hours, has bizarre dreams and hallucinations, and who may even become threatening -requires sacrifices and lots of prayer. Faith keeps me going. Don't give in or give up - I keep thinking "what if it were me and not him".
My husband and myself are the caregivers for both of our mothers. He himself is disabled with multiple physical health and mental health issues. I work full time and attend college to further my degree. Most times he is very supportive and helpful. But when he is having a bad time himself, I feel I just don't know what I am going to do.
My mother is soon to be 89 years old a widow of the only man she ever loved and was married to for 56 years before his passing, seven years ago. She was officially diagnosed four years ago, but probably was in beginning stages long before. In a three week period my mother went from asking for my father, to crying herself to sleep, asking why her mom and dad won't come and get her. It is so sad to watch this process. I don't know how to comfort her when I cannot know what is really going on inside her head. She cries almost all the time. She sleeps off and on most of the day. I try keep her involved in familiar activities to keep her awake so she sleeps at night. One thing I find she enjoys is folding towels and simple items. There isn't enough laundry to keep her busy all day so I have gone to extreme measures. I have emptied my linen closet of clean items just to have her fold them.
She and my husband sometimes getting into arguments as he tries to keep her awake or tries to get her to eat. Once when I attempted to referee the bout, my husband responded with, "She never gets in trouble". OMG, who says something like
I made a postivie step this week in that I "hired" my 19 year old granddaughter to help me. She came to our house every day this week and fixed lunch for grandpa, did some house work and laundry. That ment that I did not have to go to work early in order to have a longer lunch house to come home. It has done several things: I am less worried and tired, the house is clean, my granddaughter has some pocket money, BUT my husband delights in her company and we are making him happy within the parameters of what he can understand. This may only last for a short while but I am going to try to just do a week at a time.
Maggie, ccaregiver for husband, Carl
has anyone had the experience of their doctor giving your loved one Abilify?
One work of advice is to get help especially when you are the only family member. I contacted a friend that does companion care and she visits my mom twice a week now for 2 hours each visit. They play cards and visit. This allows me to have those days off and I am at peace knowing that she would contact me with any concerns. My mother had spinal fusion surgery and I was going every day and calling multiple times. With working a full time job, I felt totally exhausted after 6 weeks of that. She was in a body cast to support her back and had to be helped in and out of it. I also relied on help from the facility she lives at, CNA and another companion to help put the brace on in the morning. I am fortunate that my mother has the finances to support this. I will always be grateful to those that have helped me through this stage! She is now out of the brace and now we are back to only dealing with the dementia.
I agree with many feelings that others have posted. It has been the most stressful time of my life. I am the only child living here locally to take care of my mom. My sister is supportive but only comes out once a year for about a week. I am fortunate that my mother still is in the early stages of dementia where she still thanks me for the care and support that I give her. She does have occasional temper outbursts but I try to realize that this is probably her way of letting out her frustrations because of her life being out of control. She is aware that she can not remember short term events and now is starting to slip on some of her long term memories. I find myself angry when this happens because I don't want to accept that we are now moving into the next phase of the disease. She can still live independently in a retirement place but is close to having to move to the dependent area. I grieve for this next move because she will lose her nice patio home and move to a one room arrangement. I realize that I may be the one grieving more than her because as long as she feels secure, she seems to be happy. I have also found that her Exelon patch has helped her tremendously for mood enhancement. When she was off it, she was more angry and compative. I know this isn't for every patient and needs to be discussed with their physician.
Jo Ann, I punched my sister after we celebrated my mother's 93 birthday (and year 7 since she was diagnosed with Alz). I posted on Jan 1 about my 2004 Christmas memories with my mother but forgot to put my name. It still just haunts me that we couldn't give her comfort in the earlier phases when she struggled to mask it. She slept a lot of the time thankfully. I want to tell you all that she actually became less miserable as the disease progressed and after she was moved to assisted living and felt safe. We also became closer as the disease progressed as she seemed to accept it and I learned patience and how to reach her through shared activities mostly outdoors walking and in drives in the country. I have made a vow which is very difficult to keep not to focus on the terrible, hurtful things my siblings have hurled at me over the years. Their lives have not been undone by health and financial problems and some of them just visit our mother once a year. I'm not writing anything these weeks but I'm going on blogs that inspire me and spending time with some of Mom's friends. I don't know if being my mother's caretaker was what made me ill and depressed so I urge all of you to learn more and get support from whatever source. I thought I could do it alone but it's impossible.
Yes Robin i too have had the same experience with my mom. It is nice to hear but bittersweet in so many ways. But i too will hold it close for the future is looking bleak.
I have read comments now for several months, without posting anything. After reading I see I am not alone, it helps. Today i called a support group in my area for i need helpwith my aging mother with dementia. I thought i could do it on my own, now after 5 years i realize i cant.
I was tempted to feel sorry for myself today until I read some of the other comments. From now on I will pray not just for myself and my family, but for anyone who is in this situation.
It's ironic-for most of his life, my father was someone I feared-the angry, critical disciplinarian. If there is any silver lining to this disease, it's that he now has wonderful imaginary "memories" of good times we shared, trips we went on, etc. His face lights up as he "remembers". And he tells me that he's proud of me and loves me more often than he ever did when I was growing up. I know this won't last-he is more likely to become angry and aggressive as the disease progresses-but for now it's what I hold onto when I'm frustrated and tired. Hope somebody else out there has the same kind of gift for now.
I agree, Jo Ann. I am also in therapy for depression/anxiety. I would recommend it highly to anyone who is caring for a loved one with AD.
I just returned from my doctors, and asked him about therapy for me. He said that when he got out of med school, Alz. was just becoming known. The funny thing he said was that all the info the docs. got was about caring for the caregivers. He recommended a therapist for me. ( I confessed that I kicked my husband, and I was horrified that I did). The doctor just laughed, and told me to wear tennis shoes next time. He indicated that this disease was the worst kind of pain for the caregiver, particularly. Seek out a good therapist to talk to.
So glad I found this today. My mom is in her 7th year of Alzheimer's Disease. We are fortunate to have sitters who love her and take good care of her during the week. I hope that we may financially continue to afford this great care. My brothers and I take each a weekend to care for her. The hardest thing for me is that she was such a proud, fashionable, outgoing person, and now it's such a fight to brush her teeth, bathe her and wash and fix her hair.
My husband of 17 years has AD, Primary Progressive Aphasia, and Frontal Temporal Dementia. He had a total knee replacement in 2009 which really accelerated his dementia and aphasia problems. He drank daily for the 7 years the aphasia was affecting him to cover up his inability to communicate and process the spoken word. This past year I tried everything I could to find the medication combination to settle his behavior disorders, only to find him placed in the only Nursing Home in the area that would take him. In addition to his mental disorders, he also suffers from Diabetes and Heart Disease. When I told his children (a 3rd marriage for him) that he would shortly be placed in a Nursing facility for his safety, they filed for guardianship and conservatorship as well as cutting off all the funds from the company their father had given them. This resulted in the county public administrator being appointed as his guardian and conservator. The guilt and aloneness I feel just with the nursing home placement is overwhelming. But to add losing a family we shared for 17 years triples that. I have found that keeping a journal of what is happening daily and corresponding with the Public Administrator releases a lot of that stress. My only prayer is that I will live long enough to see his life through as mine is teetering on disaster. Use every tool available to you to maintain your sanity in the caregiver role. Your loved one needs you to be strong and healthy.
I was my mother's caretaker in Florida over Christmas 2004. For the first time in 6 years I'm back in her Fl house but this time alone; she's just gone from 5 yrs. in assisted care to a nursing home in NY state. I've been overwhelmed with memories of that time and grief that she will never return to this house.
In 2004 I remember sitting together at the kitchen table watching Mom struggle with Christmas cards. She was too proud to ask for help so I didn't offer any knowing it would've annoyed her.
All these years later I've come upon the cards she tried to write where she humorously mentions her difficulty completing tasks and her confusion and my heart just breaks. She was still trying to mask her condition then but it is so sad that she couldn't reach out to any of her 7 grown children for reassurance or I was too ignorant of the disease to know how to reassure her.
In 2007 I began keeping a small notebook of quotations from newspapers or books including photos and pictures. My notebook is nearly filled up now and there is no mention of Alzheimers or anything else personal--just a record of words and images that struck me, helped me, or moved me.
Karen I am sending you the biggest warmest hug ever. I hope you can feel it! Please hang in there. Your reward will be great in heaven where it counts the most. I feel ashamed feeling bad about my circumstances when you have it 100 times harder.
Karen, I really feel for you. I received some very supportive help from NAMI (National Alliance on Mental Illness) and the Family to Family classes. I'm sure it's hard for you to even have the time to attend a class, even if it would provide you some comfort. I hope this blog offers a little.
I am sending prayers and encouragment to all those who are dealing with this disease. Its horrible. My husband and I are taking care of his mother who has the disease. We actually care for 3 elderly parents. His father is 81, mother 78 and my dad is 78 also. My mother in law was a business woman, who had built a thriving business from the bottle up. She worked 6 days a week and was excellent at what she did. She no longer goes to work everyday. A couple of days a week she will go to the shop, which seems to be helping her. She was a master florist. It gives her something to do and gets her out of the house for a few hours. We do the best we can with the help of other family members. STill its a chore. It breaks my heart as she was a woman who always had her makeup and hair fixed, dressed nice and was so independent.Now its a major ordeal to get her to bath and wash her hair. We will continue to care for her as long as there is breath in our bodies. We owe that to her. As I know that time with her is limited. good luck to all out there who find theirselves in the same place.
I have also learned in the last year that those who tell you to "call them if you need anything" dont have a clue...and if one does call...there is rarely help. That contributed to the aloneness of the caregiving situation. I have sat for too long and Carl is now pacing and starting to try to do the housework that I have yet to get to...my 18 year olde grandson is being crabby because his mother is coming to visit and the out-of town grandchildren have taken over his bedroom...he is picking on me...oh well.....
I could only read the first 4 of these blogs and I am in tears, for all who are going through this nightmare and for myself. My husband of 27 years, who is 20 years older than me has early onset Alzheimers. We have been dealing with it for 2 years. Last March it began progressing. In April our house burned to the ground. I have 2 grandchildren living with us since their parents divorce and I work fulltime, and must continue to do so for financial reason, and for my own mental health. In October the day before we were to move into our newly rebuilt house, my husband broke his hip. He has recovered physically but it has taken another tole mentally. This is the most alone I have ever felt. My partner and helpmate is gone. He wanders around and waits for me to tell him what to do and then gets mad at me when I do so. I am tired, impatient and guily because i can't be nice all the time. I am over whelmed. and my new response to everything is just....oh well. I am glad to have found this blog. Bless each of you for what you are doing in caring for your loved one, may God strengthen and support us all.
I have read all of your blogs and boy do I ever know just what you all are saying. My husband and I are taking care of his Mother age 90 and boy is it ever a rough thing to watch a loved one go from being such a active person who China painted and I might add she was expert at it. But now she doesn't know where she is, is scared of my living room, talks to all her deceased family members, knows us one day but not the next and then back again. She gets on the fight at times. She wears a diaper because she has no control of bladder or bowel. So we go thru a lot of diapers a day. I myself feel all of the emoitions you speak of. We had her in a nursing home but after she went broke they informed us we had 30 days to remove her. So we brought her home to live with us. As of yet she doesn't quaify for Medicade. It is very hard and I find myself feeling like I am a bad person for letting my emoitions get me down. My husband and I don't talk about any of this, so I guess I am basicly alone here. She is in late stages but she was a proud woman and I can't hardly stand seeing her this way. Some people have told me well they think she is getting ready to die! Is this true? I love my mother-in-law but I feel my husband has turned everything over to me and sometimes I feel resentful and then back to guilty. If anyone can answer these questions PLEASE do so. As you all know it is a 24/7. She is down to 77 pounds. How can a person lose so much weight and be alive. Scared daughter-in-law
I've am managing to love and care for mom with alz, 24 yo daughter with moderate to severe traumatic brain injury from a near fatal car accident (who's 5 years clean from an addiction and has borderline personality disorder), and a son who's an alcoholic (who's bipolar), and a husband who's only marginally heterosexual. My biggest challenge is not having someone to simply hold or hug me. Where do married caregivers get their TLC when spouce can't step up to the plate? I'm hurting so badly, I just need a damn hug.
I am struck as I read all of these loving comments of how hopeless it all seems. We love our family member for me my husband with early onset (5 years now) and am saddened by where are world will go. I still work full time but and think at what price this is taking on us. I think of the lack of federal funding, no new medications on the horizon. Aricept coming up with a stonger drug to hold there patent market. A President on Vacation with an all important bill to sign for research and it depress me beyond belief. I do live in the day and all of that but life ahead does not appear to have a silver lining or a rainbow. I take care of my husband because I love him and the ground he walks on. He is well taken care of but money will run out and so will my health........I look to the new Year with gratuide he's still with me and saddeness that medical science can do nothing. Catherin er
Helps enormously to know I am not alone with the problem of caring for an AD spouse. Sometimes I feel stretched to the point of breaking as my wife declines. She is 87, now several years into dementia but I also am in my eighties, without the energy of youth. I suffer from "survivor guilt" -- that could be ME with AD. We are so close to the end of life. Daily problems take all my energy. Up several times each night to help with urinary problems, panty pads, etc. and aggession, resistance to accepting help. Help from this blog is like the help I got from AA, to know I am not alone with with problem. Gives me courage to carry on, knowing others are carrying on. Life seems so tragic at the end. But must carry on till the end.
When you live with someone with Alxheimer's, perspective on life, sometimes gets lost. Your own mental survival gets challenged. My husband's care and safety becomes the top priority. I've become more housebound because taking him out has become a great challenge. Luckily, we receive 60hrs/month home care support which enables me to get some much needed respite (sleep or shopping) where I can then block out all the negative. It's not much, but I thank God for this small gift. As for my husband, his little world is safe and secure; as it should be at this time of his life.
Oops...not sure if the link went through last time. Try this one
You're right about the power of writing down your experiences. It really does help get rid of some of the overpowering emotions. I just found this site that is encouraging caregivers to write about their experiences....worth a visit, as it does help.
Jillian, I was in the same boat as you about my loved one. Taking care of him 24 7 was ruining our relationship. Since he has moved to an Alzheimer (Memory Unit), I feel we are learning to love one another once again.
As I read your stories at some I laugh and at some I cry because everything is so true.My mom is 84 and I am 43 she has been with me for 6 mon.and all I can say is that I try to remain positive and try and remember her good points she likes to fight with my 11 years old son the good thing is his Spanish is not good and all her negative comments are in Spanish. Thank God! He has ADHD and is running around the house she hates that when he is in the refrigerator another no,no I have the best family my kids 21,19 and my husband help me a lot they stop her at door when she is all packed up and wants to see her dad that has been gone for years and years.She is so funny some times I can't help to giggle she loves to see me dancing around she don't like to see me and my husband snuggle or hug God forbid kiss he is great with her she latches on to him like a child.I am just taking it one day at a time when I have heard for the 10 time "what is today or what time is it?" sometimes I just have to go to my room.Today my daughter made a broccoli and cheese casserole and mom helped cut the onions now that is great!I wish I had more support from my brothers and sisters everyone is too busy with their lives or indifferent.One of them helps me now and then.I do need to ask them for more help.I pray a lot and this year I have asked the Good Lord for a plan for her care and the power to execute it.
I'd like to hear from others who are working full time and caring for a spouse with Alzheimer's on limited resources.
Suzanne, you aren't the only one. My relationship with my husband wasn't totally destroyed b/4 the onset of the dementia, but was very strained. I often thought about leaving, but never quite got around to it before the symptoms got undeniable. I, of course, feel that it is my responsibilty to take care of him, but that doesn't make it any easier. Every once in a while I think "he'd do as much for you", but then remember how he really was and am pretty darn sure that he wouldn't. I did make a commitment many years ago and will keep it as long as I am able, but do wonder how many others out there want to gag when they hear "your loved one."
I find all references to "Your Loved One" there must be more than me whose relationship (spouse) was destroyed before the onset of Alzheimer's and because of a commitment made 40 years ago how does one handle the difficulty of dealing with this Alzheimer's spouse. I really find it so very difficult.
I love the Gibran quote, one of my very favorites. So very true....
To Louise I know exactly how you feel. My sister is now in a care facility with early stage dementia. It is extremely difficult to see her like this. to have to go through per personal papers and effects priot to her home being sold would have been difficult had she died but to do it when she was still alive made me feel I was invading her privacy. She was such a private person. Because I live a 12 hr drive away I cannot see her as often as I would like. I phone and can talk to her sometimes but into the conversation she gets confused again. It is just so so sad. She has been the one to take care of all of the family members throughout her life and to think now when she should be enjoying her retirement she is left confused and angry. My hope is that someday soon a cure for this affliction will be found.
This is for the elder gentleman named Ken. May God bless you for loving your wife so completely! I think you should ask your church for help, perhaps one or several ladies would volunteer to sit with your wife to give you a little break. Everything you said about your wife's behavior is classic symptoms of alzheimer's disease. You need to ask for help in finding someone trained to deal with these issues or else it may be time to move her to a certified alzheimer's facility where she will get understanding care. Stop trying to deal with this alone!
I read all the entries for Dec 28th did not know this area was even around. First let me say I'm a trained cna, when I first stared this I wanted to work the alzheimers wing as this was the up and coming problem. I learned a lot there it was so sad to see mother fatner daughters & sons come to visit and there family member did not know them. To see the tears was very hard,. I am married to a retied fire fighter we have been married 55 years he is 84 and I'm 74 he is fighting with alzheimers a man who help so many people for 33 years and now he can hardly help him self. His sister had the same problem so I seen what her children went through and it got closer to home. Now althought I know alot its much harder because it my husband, yes you do get mad some times but its what you see happening to them.For now I have collected all the equiptment I might need in caring for him,(thank god for garage sales) In checking with nursing homes and retirement center yes they are expensive so we have decided to stay put there are companies that will help you stay in your home.The people I worked with always said its going to be harder when it a family member. May you all have strengt, patients,and understanding.
Thanks for the blog. I have been bring our home 'up to code' wondering if it would be better to sell and place John in a nursing home, kowing I need to take care of myself first to be able to care for him. Trying to understand John's problems with patience and resolving them one at a time is the best way for me to go.
I quit my full time job in July of 2009 to care for my mother who has AD. I am an only child and my dad passed suddenly in 2006. Last February it became clear to my daughters and i that i needed to move out to the farm and be there full time with Mom. She had given me POA right after Dad passed, and wanted my help then because she had never handles the business end of things. The girls and i moved in with mom and my husband stayed at our home in town. Shortly after i moved out there, mom no longer remembered me as her daughter, but thought i was a hired helper. She remembers from about 1950 and before, but not much after that. I deal with her Hallucinations, Paranoia, hiding things, anger issues, and all the other things that come with the silent disease. She is 83 and i am 49. My marriage has failed because of all this... i feel alone, but my love for my mom drives me every day. Her vision has failed over the last 10 years so that she can only see shadow images, and this is an added hurdle with our journey. Her Doctor and i have talked and considering all the "life-events" that have happend over the last 5 years... we felt the best place for her was in her own home as long as possible. She and Dad did so much for me growing up to make my dreams come true, that this is a small gift i can give to her. She worked for 25 years in a Nursing Home and when she retired, she made Dad and i promise never to place her in one. I would love to share with other's l
Hello, My sister is allready in a good facility.I have settled all her personal belongings except what's she needs and wants. It is as if she is dead and this is her estate. How difficult it is for me to make these decisions and handle her finances. There has to be many relatives of dementia people 'out there' like me. Please offer guidance, advice, direction etc. Yes, we also would like verbal attention from Mayo. All is not one close knit family but people who are tossed together due to the needs of a family member with dementia. Thanks
My husband is 81 with vascular dementia. He takes Zoloft & an anti-psychotic medicine. He is completely dependent on me now so I am driving again. For a few years I had anxiety attacks & now take medication but researching, praying, doing book reviews on Amazon, keeping in touch with family, thanking God daily for my blessings, and learning to be kind and patient - I can manage - so far. God bless all caregivers - we learn to do to our loved one as we would want them to do for us if we were in the same awful condition. Make necessary changes, write down your thoughts, and be optimistic. To combat depression - try thinking of all the wonderful memories. I never expected Alzheimers in my husband. I will write a memoir for the children. The last few years they cannot accept this disease and tend to avoid us. Only one daughter is my best friend thru this difficult time.
I am afraid I made a bad judgement in having my wife's two daughters and their family to our home for Christmas Eve lunch. That was not something that my wife was accustomed to and did not know them or what they were doing in our home. Since that time she has been less responsive and is sleeping most of the day. I notice in her dreams she is talking with her father who died many years ago, about things they were involved in together. I am heartbroken with the feeling she will not regain any of her excellent mobiliy and interest in things that she had as late as last Thursday, a week ago. She let her care givers take her to the beauty parlor, and was going weekly and enjoying a milk shake, Christmas lights, etc. That seems to be gone now. As I said, I am afraid she will not return to last weeks state of mind.
I too have keep this blog as I really have enjoyed it. My charge passed on the last of May and I still miss her so bad, she was such a delightful person. I had known her for over 30 years and was one of my friend's mother and when they ask if I would care for her I told them YES!! I moved in with her and was with her app. 23 hrs a day. Of course we had our ups and downs, I also kept a journal of her progress, body functions, what she ate and how much, her meds. so the Dr.'s, nurses would or could see what she was doing, plus I also kept a personal journal for my feeling and funny happenings. We all need to keep our sense of hunor even in the most trying situtations. and that at times is very hard. Keep up the good work, keep your chin up and hold your head high. Because "There but for the Grace of God go I"
I don't know where to start. 3 years ago I started a diary, lasted about 2 weeks. I attended caregiver groups, started to see the same people at different group settings but the dialog became redundant.I have and have had caregivers come 3x a week for 2 hrs. each. This has been very helpful as I do not have any family support as we do not have siblings, my only child moved to England and two grandchildren are not interested in visiting except a couple of times a year. Our church provides us with meals 2x a week and they can last 2 days. We go to church almost every Sunday, sometimes challenging especially when my wife will say out loud "won't he ever shut up". I have difficulty with 1. changing clothes, she sleeps in the same clothes resists (strongly) my changing her. I have slowed down to about 1x a week. 2. Strongly fights bathing The resistance is so strong that I only force it on 1x a month. 3. She resists going to the Dr. I tell her I am going and this usually works. 4. She refuses to brush her teeth, I get this done about 2x a week. The dentist has been very helpful but the last visit, last mo. will probably be the last as she she disrupted other patients. We are in our 7th year and the progression is slow in relation to what I read. She is 84. we have been married 58 yrs. She is very clinging, wants me by her side constantly, holds my hand almost all night. I help her to the bathroom 3x a night. She remains continent and able to feed herself. I h
I have a friend who was in the same situation as Don. Her husband was far advanced with Alzheimer's and she could no longer care for him at their home. She sold their home, which was comfortable and which they loved, and they moved to a facility that provided a complete-care unit for him and an apartment for her, but which was very expensive. Because her husband became violent he could no longer stay, and she had to move him to another facility. She could no longer afford both places, so had to move to a place that is OK but not what she loves. She regrets terribly selling her house. My suggestion to Don is to find out if there is in-home care that would provide what his wife needs, or to face the fact that he can no longer care for her and move her to a good facility that would care for her while remaining in his own home. Having done for her everything he could, hopefully he would NOT feel guilty. He should think really hard about selling his home, because once it's sold it's gone. God bless you and your decision, Don, and give you, your wife, and your family peace.
My love one seems depressed. He often just sits and stares, doesn't help to ask what he is thinking because asking questions always leads to an inability to have any conversation.
You have written my situation exactly.Toaster and all.
There are times my husband is playful with the grand children. Other times he is argumentative, because he resents the power he had, I know he feels that power is being taken away from him. I understand his feelings, but of course, rightly
so, he can not know the strain I am under taking over all things that require decision making, he used to do. Thank goodness my son has a head for numbers,
and together we have all decisions under control.
Yet it feels like a tug of war with him, because he feels so helpless, and insists he can still do what he was excellent at doing. Frustrating both he and I.
It's like a tug of war, when I the caregiver should be loving and caring,and he should be relaxed that he is taken care of. It doesn't work that way with us.
How can he be relaxed, when he is confused, and I in turn get angry at the situation we are both forced to live in our twilight years. He is 78, I am 72 yrs.
I pray tomorrow will be better, but I know it won't,
but he doesn't, and he can not know with AD.
Angela - thank you for maintaining this blog. It helps immensely to know that there are others "out there" struggling with this disease. It also helps me recognize all the new struggles we will face at varying stages of the disease, which is why I want to reach out to Judith and tell her gently...don't be mad over burned toast! One day, your husband may not remember how to even make toast. My mom is well beyond the point of even recognizing a toaster now. As the disease progresses, you will find that you will need to draw upon an inner reservoir of patience that you probably didn't even know you had. Best wishes to all.
Judith, I know how you feel about the toaster. My husband is very destructive, to the point, I try to do everything in the kitchen. We have to take over more and more things, and make up reasons for doing them. Possibly try, "I'm making myself some toast, want some?"
Since he can no longer drive, but can drive his golf cart, I'm trying to deal with the fact that he parks the cart next to the car and scrapes the side of the car each time he comes in or out! No matter how often I have suggested that he pull into the next parking area where there is room, and then pull next to the car, it
falls on deaf ears. Which brings up the problem, he can't hear, but won't wear his hearing aids!!!
I recently started writing about my father and his dementia. It does seem to help, although I go through times where I can't seem to find the words. I am also putting what I write away for my children. I hope they don't have to deal with this with me or my husband or their inlaws, but incase they do maybe it will help.
merci beaucoup pour les conseils, thanks very very for all the good support.....from canada
Is there a right way to handle frustrating situations?
We bought a new toaster , and he keeps burning the toast, which includes burning smelly in the kitchen,living room etc. How to respond? I offered to purchase a new, easier toaster. He rejected the idea. Have to clean the burn marks from the toaster now. We both get angry
My Mother passed away Dec 13 - so very sad - but she passed away very quickly and peacefully at my home. I have been her caregiver for several years although she had sitters, 24/7. It has been the most stressful time of my life. I thought I would unsubscribe to this wonderful newsletter, now that Mama is gone, but find that it still continues to help me sort out my feelings at this difficult time. There was not a support group locally, so your website and all the comments posted have been a lifesaver. Please know how much you are appreciated. Please continue to help all the caregivers in the future years.
This is the most stressful time of my life and the saddest time of our married life. I find myself frustrated, sad, without patients, and unsettled. We are contemplating a move to a retirement village, and I am so conflicted about it. We are moving from a very comfortable home and our son and daughter in law to a very expensive building full of strangers. I am so tired of thinking about this and so uncertain about the move.
Initially I kept daily/weekly logs to give to doctors so they would understand that my wife was experiencing symptoms of Alzheimer's, despite the doctors' diagnoses of anxiety or depression. Sadly, most doctors paid scant attention to my logs and my wife's condition was misdiagnosed for 3 years. Since diagnosis, however, I have found that continuing to maintain a journal/log ... sometimes daily entries, sometimes weekly ... has a very cathartic and positive effect on me. Writing is a great way to vent one's emotions, as well as a wonderful means to clarify my thoughts since I have always viewed writing as 'thinking on paper.' I also share some of my log entries with our children (ages 40 and 42) to keep them in the loop. These journals/logs, as well as my postings on various websites such as this one, have truly helped me remain sane as my life as a caretaker/spouse changes dramatically with each decline that my wife suffers. I definitely second what Angela has written in today's blog. Definitely consider writing and definitely continue to share your concerns on this and other blog sites as well as in weekly or monthly support groups!
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