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Johnny, I understand where you are coming from. My husband was on Namenda and he got so depressed and belligerent that he had to be put on Seroquel to manage him. Long story short, we took him off Namenda and he calmed down after about a month. He is now on different medication for depression, but there's no way I would let them give him Namenda....and his memory has actually improved since he was taken off! If the medication isn't working you may want to request that her doctor change her medication.
I don't think he will qualify for respite care and I have to watch how much money goes out. There is a adult daycare near me and I have thought about taking him there. I just have not done so yet. I have no family here and no one to talk to and I feel soooo angry most of the time.
Oh, adajaha, you've come to the right place for advice and I hope you do get pointed back to the right direction. You, like so many, are clearly overwhelmed. The first step was reaching out. Your next step should be arranging for a respite -- time off, away from the house, so you can do whatever or nothing at all. Just time to relax and re-charge a bit. You have to take care of yourself or you won't be able to take care of anyone, and you need a break. After you find some help with a quick respite, make your next step finding permanent, part-time in-home care help, and the next step is to get hubby into some kind of social activity -- perhaps Adult Day Care, for a few hours a day, one or a few days a week. It will do both of you a world of good, and along the way you'll find the resources you need, if you look for them. Hopefully more forum members will post some concrete ideas and links for help to get your rolling. There are some wonderful people on this forum, and we all know, to some degree or another, what you are living through.
Taking care of my husband since March of 2014 and I am going crazy. He had surgery on his shoulder and his mind was gone when he came out. They say it is dementia. ?? Things he does all day long drive me crazy and I never have a minute alone. He is like a shadow. Even when I go to the restroom. His memory of people so far is ok but everything else seems to be gone. I have trouble with my temper and it is very hard to control. I was told to have someone come in and go out but I have no where to go and nothing to do. He does not want me to do anything in the house except sit or lay down and watch the TV. He does not pay attention to the TV nor can he do anything. I just do not know what to do any more.
I've been a caregiver for 6 1/2 years. One thing I've realized is not to lose yourself. Be a loving, caring, kind, compassionate person. Not just to your loved one, but to yourself as well. You deserve that. Take a scheduled break and do something for yourself. It's essential.
well, some of us have not chose to be a caregiver.....I would not chose this in a million yrs, it is difficult, makes me crazy and the anger and hopelessness, let alone the resentment I feel because i didn't deserve to be left in this position in life, with little money, haveing to do all the important legal and financial matters, as well as having to work hard at this age, has left me so drained. It is a difficult time right now and I realize I need to find some help, I'm the one who needs an attitude adjustment and more solutions. It's not that I don't love my husband, it's just that I hate this whole predicament, a journey that coul've been made easier if we'd both done a lot of better palnning a long time ago. I'm also a caregiver to a grown son who had an accident 6 yrs ago and has a TBI.....so, two men with brain issues is a difficult task, takes the stuffing out of me and makes me question my own sanity.....I used to be a very strong woman, a caring person who loves to be with people.....I have no one anymore to really "connect" with, talk to or share a meaningful life, matter of fact, I haven't much of a life......and this could go on for yrs......anniekins
Get Out while you can.... Been taking care of my father for 1year and a half and now I feel nothing but anger and resentment all the time. Right now I feel stuck and trapped. We did not think we would be taking care of him this long. Thought he would get better. Boy, were we wrong!!! It changes you.. It has me and not for the better I must say.
my mother had cancer an passed on 3-19-11. I moved in with her along with my two children.So I know where youre coming from. There was days when i just didnt know how to deal with EVERYTYING But I did it. Just keep going when you can an take a break when you need to.
Thanks for the reply Annie. You have contributed to my knowledge of vascular dementia. I wish you well and hope your other siblings will find the decency to contribute a little more to your mother's care as you have a lot of responsibility.
Maggiesue my Mom has Vascular Dementia. Mom is happy in her own world and sometimes when she smiles at me I just feel so much love for her. She doesn't know I'm her Daughter but she knows she is safe with me. I'm lucky that she has no pressure sores, has a great appetite (has to be fed) and aside from the fact that she has to be moved with a hoist now, she's really in good health. Actually the hoist has proved a blessing because even though my brother has been a great help for the physical side of things, the hoist means I can move her on my own. The way I look at it is Mom had 10 kids - she was a great mother and lived her life for her kids. Surely at least 1 of us can take care of her. I'm obviously having a better day today than I was when I wrote the initial comment. I've had a break for a few hours and feel much better about my situation. I've learned that regular breaks are really really important for your mental health.
Oh man, AnnieGirl. 13 years is a long, long time. What kind of dementia does your mother have? It sounds like she is in the last stages of Alzheimer's. How do you keep yourself healthy with all that lifting work?
I am a grandparent and have a 93 year old mother with mild dementia. If she gets bedridden she'll have to go in a home. I can't do the physical work to care for her. At this point I help her with errands and paperwork. She lives alone by choice.
I have been caring for my 91yr old Mother for almost 13yrs now - She was diagnosed with Dementia in 1998. I'm one of a large Family and I have been pretty much left to care for her alone. One thing I will say to you, if you have siblings then you should insist on you all sitting down and discussing what each of them is willing to do to help. Do up a chart and insist that they must do their parts, no matter what excuses they come up with. My siblings are all much older than I and most are now Grandparents and apparently their lives are much more important than mine. They also live overseas but come to my home every year for their 'annual vacation' and don't help. I could count on one hand the number of times any of them hav fed Mom. None have washed, dressed or changed her - she has to be moved with a hoist but none have ever done this either. I am so very sorry that before I agreed to move home and do this that I didn't set out a charter with the rest of the family where they would all take a week of their vacations and give me a break. 13 yrs is a long time to be caring for someone with Dementia. I love my Mom dearly but I don't know how much longer I can do this. I work part-time thank God because it keeps me sane and I have a few very good friends to whom I vent when I need to. You are just starting out and I hope the journey will not prove too much for you. Make sure you are not isolated and ensure that you have some kind of a social life. It's for your own health. Good Luck
If u are like the rest of us and It just happen then you came to the right place because if you read what other post on here like i did ,others are in worse shape.You do not say who you are taking care of? Venting is part of getting your mind right or worng. So welcome to our little world and stay a while,johnnycares
johnny.....has your wife been diagnosed with Alzheimer's or the general term of dementia? What medication is she on? One thing to remember is that these medications are not a cure...they only work to help the patient retain what memory they still have for a while. There is no reversal of this disease; it is progressive and will only get worse over time. Do your children live close to you and are they willing to lend a hand? I haven't looked at your profile to see what part of the country you are located in, but I am sure there are sources in your community that you can go to for assistance. Family Services, Division of Family Services, a local Alzheimer's group, Visiting Nurses Association.....talk with your wife's doctor about sources available for help. Also on this site, on the right side of the page, you can enter some info and it will find places in your local area, such as day care. This is not an easy job you are doing....but caring for your wife is very commendable and it's wonderful that the love you have for her is allowing her to stay in her own home. It does get frustrating at times and please understand that is normal and there are times when you just need to let off some steam and not be judged or made to feel that you are doing something wrong. Look at the "Grossed Out, Need to Vent" thread on this site. There is a wonderful group of care givers there who will welcome you and give you the support you are looking for. Take care of yourself and hope to read you on the Grossed Out thread.
I do not know where to began. I have grown adult children ,five of them I am 72 and my wife is turning 70 next month. For the last three years she has gotten bad with her memory and. I just wish but of course that doesn’t work. How can I get some free time for myself? Today I got frustrated and it hurts to see her crying and mad. These memory pill do not seem to work at all. It is to me a wast of money.Thanks for letting me vent.John
Hey there, welcome this cool site that is very helpful. I know the feeling...but if you can find the time, take some breaks for yourself during the day (or night - depending on your schedule). You can also pick up some good books, hobbies, or take an online course. These are just some suggestions. Hope they help ;-)
While I'm not a 24/7 caregiver, my mom is, taking care of dad. I visit them almost every day after work. Mom's health is declining, as a result, and I get the duty of listening to dad's issues as well as mom's, as they don't really have anyone to talk to. So I kind of understand where you're coming from. Aside from my issues with my folks, I have two daughters, who although they're in their 20's, they still need me, as well as my husband. My parents are so consumed with their issues, however, they don't even know what else I'm going through. Sometimes, I feel so alone. This sight has been so helpful in letting me know that there are people out there going through the same things, and feeling the way I'm feeling. No one prepares you for this, and since our parents most likely didn't have family members living as long as they are, they have no idea what we're going through either. I've read, and heard it all: don't feel guilty, take care of yourself, etc, etc. And while it sound so great on paper and makes so much sense, it isn't always as easy as it sounds. Use this site to vent, as a sounding board, to get advice. It's nice to know that there are people out there, who understand what you're going through. Hang in there. I know I am! Good Luck!
Well I have a pen pal in the same situation, so we email every month or so. just knowing that there are others in the same situation. (I have other family members who just don't want to hear any 'unpleasantness.') You might consider writing in a journal every day to vent your feelings, also. Good luck - I know exactly how you feel! Big hug from me to all of you.
I am from a large family and have ended up being the primary caregiver. I think some of us fill that role in a unique way that truly helps the elderly person for which we provide care. That being said, please do not forget who you are. Discover what truly matters to you and continue to pursue it in whatever way you can. Being my mother and father's caregivers has taught me a great deal about strength, courage, and what I consider valuable. Talk to us online, make friends with the doctors, people at the drugstore, and everyone else you see frequently. Make your parent your ally, and he or she will help you with the tough decisions you have to make for them because they will trust you. Best wishes and stay in touch.
I'm not sure what Cat was talking about when they mentioned pity parties but I have found that having an outlet to vent frustrations and such can be very helpful. Care giving life is definitely not a bed of roses and try as you might you sometimes just can't laugh something or other off. Venting has saved my sanity and it was venting to people who know what I went through. People who would listen. That kept me sane. And yes, there is some really great information on this site and some REALLY great input and information from those that are actually doing the care giving themselves.
Yep, Me too. 24/7, alone, going on 5 years. The one thing that keeps me sane is the "Grossed Out?" thread on this site. I found a family there that Beats my real family by miles. Come over and join us?
dear ginger , u got rip off ! whats going to happen when that non family passes away and u go out on the street with no money ! room and board should be for watching that person , but as far as takin care of the yard and all others u should get paid for it ! if i was to hire someone to come and sit with pa , its 19 bucks an hr ! but as for room and board i would say part ofthat should go toward that . sounds like to me ure doing it for free and ure begin takin advanatge of . u need cash paid too , save that money for when u gotta leave .
Thank you to all who offered words of support and suggestions. I appreciate it. It is helpful to know that other have and are doing the same thing. Thanks for your words of wisdom.
Family dymanics are strange enough, but when you put a dependent senior in the mix you will find that everyone "scatters." Even your long-time friends do not want to hear about your journey because it is a "downer." I say do what feels right on a daily basis. If you have to "recede" and become reflective for a day...do it. If you have to come here and vent...welcome, we have all been in that boat. Until someone walks in your shoes they have no right to criticize or ask you to do more that you already are. This site is one safe haven for me to express my frustrations but also share the knowledge I have gained. I discovered that my sanity is something that I have to fight for and protect. good luck, Lilli
I have been doing this for 4 years now, the last 2 for 24/7. I have 6 siblings that pretty much leave everything to me. There are many reasons why I became the chosen one. At the time i agreed to quit my job and take care of Mom, I thought I was going to get help from the others. NOT!!! I've since learned to move on and deal with the situation as best I can. Find your local senior center and contact them first. They know all the options for finding help in your area, and will even help you fill out necessary paperwork, etc. Your next best bet is to go online for information on what diseases, mental and physical, you are dealing with. The doctor's office is also a good source of information and connections to people who may be willing to help you out. Definitely find out all your options for monetary aid. You are going to need it. But most of all, give yourself a break whenever you can. If you don't take care of yourself, you can't take care of anyone else! Ginger, Since I don't know where you live, you might check with your state for aid. Is the person you are caring for on state health insurance? If so, in Mass. there is a program called Caring Homes, that pays the caregiver for taking care of the person they are living with. Good luck to all of you, and keep coming back to us with your concerns. All of us will do what we can to help you.
i AM ALSO A 24/7 CAREGIVER, FOR A NON FAMILY MEMBER, iT STARTED OUT AS I WOULD HELP FOR THE COST OF MY ROOM, NOW ITS TAKING UP ALL MY TIME AND ENERGY, i DONT EVEN HAVE TIME FOR MY OWN FAMILY. i HAVE TO STEDILY MONITER HER DIBETES AND LUNG TREATMENTS AND OXYGEN AND ALL MEDICATIONS, PLUS COOK AND CLEAN FOR HER, MOW THE LAWN ETC, ETC iM EXAUSTED. AND iM BROKE, i RECIEVE NO MONETARY REWARDS OF ANY KIND. i WOULD LIKE TO KNOW WHAT TO DO ALSO. pLEASE, BEFORE I GO NUTS!
Hi there - I am a 24/7 sole caregiver - - done it for 7 years now. Ask away. The best advice I can give you is keep yourself upbeat and don't get pulled into pity parties - especially online. It is not that hard to remain sane if you remember to laugh, and move on. Whatever mood you reinforce will be the one that sticks. That means if you feel down, thats ok - but if you constantly 'vent' about how hard everything is, then at one point it will become too hard. You didn't share anything personal - so please feel free & no one will judge you. Edvierjar is very wise & his advice is good. I can tell you though that being the only caregiver happens to alot of us. You can also take this time to learn alot about yourself - there is a level of emotional honesty and insights that you will reach when you are caring for someone else. Take that as a blessing and use the time to really understand yourself and where you want to grow.
If you remember the reasons why you have made the choice to do this, and participate in disease specific forums in addition to this site you will feel better. (ie. - Alzheimers Association has a live help-line, as do other groups). Oh, and although it is easier said than done, try to keep good consistent sleep and meal schedules for yourself - that messes up mood and stresses your body. Tulsi (holy basil) tea is also a good beverage - try to balance what you eat & stay away from all those lovely comfort foods containing Fat Sugar & Salt and stick with a moderate diet - there are many online sources for healthy menus & recipes.too.
You don't say much about yourself nor whom you're caring for. That being said, the only thing I can recommend is take care of yourself first. Develop a network or support system (this forum is a good place to start) and manage your time effectively. There's no way you're going to keep your marbles and go at it 24/7 all by your lonesome. There's a plethora of tips for caregivers on the Internet; I suggest you make a habit of going online and don't be afraid to ask questions. Also, words like "saint" and "martyr" shouldn't be part of your vocabulary. Neither should the phrase "a little pain is good for the soul." Keep us posted, and welcome to the family.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
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I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
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APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
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If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
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This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
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You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
taking him there. I just have not done so yet. I have no family here and no one to talk to and I feel soooo angry most of the time.
I am a grandparent and have a 93 year old mother with mild dementia. If she gets bedridden she'll have to go in a home. I can't do the physical work to care for her. At this point I help her with errands and paperwork. She lives alone by choice.
Jam
Aside from my issues with my folks, I have two daughters, who although they're in their 20's, they still need me, as well as my husband. My parents are so consumed with their issues, however, they don't even know what else I'm going through. Sometimes, I feel so alone.
This sight has been so helpful in letting me know that there are people out there going through the same things, and feeling the way I'm feeling. No one prepares you for this, and since our parents most likely didn't have family members living as long as they are, they have no idea what we're going through either.
I've read, and heard it all: don't feel guilty, take care of yourself, etc, etc. And while it sound so great on paper and makes so much sense, it isn't always as easy as it sounds.
Use this site to vent, as a sounding board, to get advice. It's nice to know that there are people out there, who understand what you're going through.
Hang in there. I know I am! Good Luck!
if i was to hire someone to come and sit with pa , its 19 bucks an hr ! but as for room and board i would say part ofthat should go toward that .
sounds like to me ure doing it for free and ure begin takin advanatge of .
u need cash paid too , save that money for when u gotta leave .
I say do what feels right on a daily basis. If you have to "recede" and become reflective for a day...do it. If you have to come here and vent...welcome, we have all been in that boat. Until someone walks in your shoes they have no right to criticize or ask you to do more that you already are.
This site is one safe haven for me to express my frustrations but also share the knowledge I have gained.
I discovered that my sanity is something that I have to fight for and protect.
good luck,
Lilli
Find your local senior center and contact them first. They know all the options for finding help in your area, and will even help you fill out necessary paperwork, etc. Your next best bet is to go online for information on what diseases, mental and physical, you are dealing with. The doctor's office is also a good source of information and connections to people who may be willing to help you out.
Definitely find out all your options for monetary aid. You are going to need it. But most of all, give yourself a break whenever you can. If you don't take care of yourself, you can't take care of anyone else!
Ginger, Since I don't know where you live, you might check with your state for aid. Is the person you are caring for on state health insurance? If so, in Mass. there is a program called Caring Homes, that pays the caregiver for taking care of the person they are living with.
Good luck to all of you, and keep coming back to us with your concerns. All of us will do what we can to help you.
If you remember the reasons why you have made the choice to do this, and participate in disease specific forums in addition to this site you will feel better. (ie. - Alzheimers Association has a live help-line, as do other groups). Oh, and although it is easier said than done, try to keep good consistent sleep and meal schedules for yourself - that messes up mood and stresses your body. Tulsi (holy basil) tea is also a good beverage - try to balance what you eat & stay away from all those lovely comfort foods containing Fat Sugar & Salt and stick with a moderate diet - there are many online sources for healthy menus & recipes.too.
You don't say much about yourself nor whom you're caring for. That being said, the only thing I can recommend is take care of yourself first. Develop a network or support system (this forum is a good place to start) and manage your time effectively. There's no way you're going to keep your marbles and go at it 24/7 all by your lonesome. There's a plethora of tips for caregivers on the Internet; I suggest you make a habit of going online and don't be afraid to ask questions. Also, words like "saint" and "martyr" shouldn't be part of your vocabulary. Neither should the phrase "a little pain is good for the soul." Keep us posted, and welcome to the family.