My dad is taking care of my mom, who has dementia. She's a person who likes to comment on others, and insisted my dad can't do certain activity and stripped away his freedom. Is there any ways to deal with this? I don't want to see my 72 years old dad live unhappily with her. Can we just ignored whatever she suggest and do it our way?
Within the past ten years I have been a Care Giver. One of my most important experiences was taking care of my elderly mother. Suddenly I became a member of the "sandwich generation". My mother has always been an extrovert, loving, caring, and giving person. At the age of 74 she began having minor black-outs. On November 23, 2013, at the age of 84, my mother had a major black-out. EMS rushed her to the hospital. The findings were that she has 80% blockage to her brain and 50% blockage in her left neck artery. The doctor said if she was to return to live in her apartment by herself, I needed to find a Care Giver to help take care of her. Simple things in life for her to do became daily challenges. She found it very difficult for her to say words that she wanted to say. She realized on her own that her health and life were changing into the world of having dementia. She asked me to sell her beautiful home and car. I know most parents will put up a fight in not giving up their home and car (independence). I felt at that time that my life was getting ready to experience a serious change and I didn't know what to expect. She asked me to move her to Independent Living and I followed through with her wishes. The past two years my mother lived in IL. I prayed that she could continue living there and I hoped she could stay there and pass in her sleep. All the elders in our family have passed away in their sleep. My mother started wondering through her apartment trying to find things. I would ask her what she was looking for so that I could help her find them. She would reply, "I don't know what I am looking for. I am just trying to find it". My mother originally loved living in her IL apartment. I decided what I needed to do was find a Care Giver for her. I hired (2) Care Givers so they could work alternate work weeks. This allowed each Care Giver to have time to rest and enjoy their life. This also allowed coverage in case one of them needed to be out of town. This also allowed me to know that my mother was always taken care of. Hiring the (2) Care Givers allowed my mother caring and loving companionship. I worked one day out of the week just to make sure my mother was happy and that she was properly being taken care of. We all became so close to each other that the Care Givers will always be a member of our family.
On March 12, 2014, I took my mother to see a specialist to review her medicines and to see what medicines she needed to stop taking and what new medicines needed to be added. This is when the prescription for Aircept was prescribed for my mother. On March 13, 2014, my mother had another serious black-out. EMS rushed her to the hospital. She felt very confused, lost and agitated. The next morning the doctor told me that he needed to talk to me out in the hall. He told me that my mother had a Care Give to take care of her 7/24, she could never return to live in her apartment to live by herself. I did extensive research through local offices who hire Care Givers and for Care Givers listed on Care. I also did an extensive search and visited Assisted Living-Memory Care facilities. My mother insisted that I move her to AL. No matter how I looked at this move for my mother, I knew it was going to be expensive. Until I made my decision in this matter and I had a safe and secure place for my mother to live, the doctor was not going to release my mother from the hospital. Every day the doctor and Case Manager were calling me and asking if I had found a place for my mother to live. To make even a longer story shorter, I decided to move my mother to an AL facility near to my home. I don't feel guilty in making this decision to move my mother to an AL facility because she requested me in a loving way to do this for her. My mother has lived at AL for the past two months. If you had seen her before I moved her from her IL apartment, you would have thought she was already on her (death) bed. You should see her now! She looks like a whole new person! She receives good meals, the Care Givers and Management loves her and her personality. She cares how she grooms herself, she has made new friends, and she is kept very active. She needs an additional $1K per month to live there at the AL facility. The VA representative is very serious about helping us to get this $1K "VA Financial Spouse Assistance" for her. We all need to have "hope". I have contacted some more AL in our area but they are asking more for monthly rent than what she is already paying. It is my understanding, and I clearly understand, it is not a good decision to keep moving an elderly person to another AL facility either in town or out of state.
Please note that I am not soliciting business for the VA. I asked to be contacted so that I could share my experience and thoughts on a personal basis. My father served in the military service. The past ten years my mother applied for VA financial assistance (3) different times and each time was denied. The VA kept denying her benefits because she could take care of herself. The last letter stated that if her health and life changed for the worse, she needed to reapply for benefits. My feelings were, "Right -- reapply again so she could be denied again?".
Agingcare.com protects members by not allowing Internet addresses to be sent to a member. I have tried to share as much information in this matter that I possibly can. I have a lot more experience and knowledge to share in this matter for elders wanting to qualify for "VA Financial Assistant for Spouses". My sincere hope is that for any elder or their family who is trying to obtain this benefit will receive as much assistance, kindness, understanding, and help we have from our VA representative. The VA representative we have been working with has been wonderful in assisting my mother and I. This particular VA representative has made good things happen for my mother. The VA that we have been working with doesn't charge a fee. He does help the elderly in applying for "VA Financial Assistant for Spouses".
In my mother's earlier years of her life, she appointed me in her "Revocable Living Trust" as her Care Giver, DPOA, POA and MPOA. It is extremely important that elders process and sign a will of some sort so that matters don't go through probate in court. I am very thankful that my mother did her will for me. This allowed me to take care of her and her health, ordering her medicines and supplies as needed, taking care of her monthly bills, and processing her banking. I prepared her daily med boxes, cooked her meals, monitored her vital signs, assisted her with her bathing and daily grooming needs, took her for her doctor appointments, processed her monthly banking, light housekeeping, and purchased her weekly groceries, etc. I will continue doing things for her that AL doesn't provide. My mother's PCP and her health insurance had Home Health Care visit her during the week and this was a tremendous help. I continued the responsibility of taking care of my marriage and family and home.
My desire to work in the health care field is two fold. I wish to share my knowledge, experience and love with the elderly and their families, Care Givers, and community. Provide assistance in showing that we care about the elderly and that they are important. I enjoy knowing the patients, while helping to improve their health status and taking care of their immediate health needs. Assist elderly patients and their families when significant challenges are present. Communicate input to show that policies and procedures are being followed. Keep informed of the workplace health and safety concepts. Prepare the elderly for examinations and visits. Responsible for maintaining supplies, equipment and medications. My second desire and purpose is to be a speaker advocate to education Americans about what Medicare, Medicaid, and what they do and don't cover. Promote ways that people can talk to each other and share their stories, tips and wisdom. Urge a national discussion about how Americans approach advance care planning. Engage communities to offer both practical and emotional support to the elderly, families and Care Givers, and make communities more livable. Educate health care professionals, older adults, and their family caregivers about palliative care and how it can be integrated with health care and supportive services. Advance proactive public policies and programs to help people know where to find the right kind of care and help even before they need it, at an affordable cost. Better options are critically needed by American families to help them pay for long-term services. This must be a public policy priority.
I do find some grounds for hope. What are my qualifications for pursuing my career and offering advice? Certainly I am no expert in this matter. My soul qualifications are to seriously help take care of the elderly and their needs. Provide hope where there seems to be none. Offer advice that might help in making decision. Regardless of any situation, the worse thing a person can do is to nothing at all. Our parents regardless of their age at the time we were given birth, they are still our parents and we need to help take care of them in their elder years. We must learn to enjoy and appreciate their company. Elderly people are kind, wise, and have wonderful stories to tell us. I love helping to assist the elderly, their families, and their Care Givers. As it has previously been said, "The customer is always right". Follow your heart. Ask God for His help because He will listen and help you.
Again I wish to thank Agingcare.com for being available for making it possible for all of us members to share our concerns and for allowing us to reach out for help. I want to thank each of you for sharing your time with me. I hope I have been of some help to you. Each of you have provided me with additional experience and knowledge that I will continue to use throughout my career.
I wish each of you and your family the best in life. My thoughts and prayers are with you.
Sincerely,
Eva
Care Giver & Advocate Speaker
Is your mother getting medical care for her dementia?
I did not accuse you of "trolling for business for the VA". I accused you of "trolling for business". And I still feel that's what you were doing. You just didn't expect to be challenged.
I was harsh because I find solicitors offensive, especially ones who assume a position of superiority and knowledge which you seem to feel you have, and we don't.
One of your statements of so-called "advice" is so far off base that no only is it erroneous and flat-out wrong, it isn't not even helpful.
And I repeat: what are your qualifications?
1. wrap up the handphone with plastic, becoz she thinks since we take bath daily, and we didnt do that to the phone, so why not put a cloth on it.
2. there's no dining table, no sofa, no living room in her house, only a lazy-chair, because she think with that she can just sweep the floor without have to take care of anything, and the chair is wrapped up with plastic on some parts.
3. The way she prepare food is with rice cooker, everything is steamed, and she is used to buying certain cook food and stored it in the fridge, and steam them through out the week, and my dad is prohibited cooking what he wants to eat
4. My mom claims that she is worrying and care for all of us, and when I was sick, she chase me out from the house because she can't deal with it.
5. Whenever there's a gathering, she keeps talking non-stop, she never listen, but keep preaching about her abnormal ideology, repeating the ideology she has since years ago and keep repeating them over and over.
I think one of the reason for all this behavior could be due to my dad lost all his money and got into debt (business & gambling) long time ago, so my mom is the one who feeds the family, maybe that cultivate the RIGHTEOUS and try to control everything.
I know she did a lot for the family, but that doesn't means now its the time my dad to do everything she insisted on and let her stripped away his happiness. btw, insisting my dad doing things her way doesn't make her more happy though.
I am perfectly fine when she wants to do whatever she wants on herself, I respect her freedom and since she enjoy doing weird things (e.g she wrapped up / covered almost everything thing in the house with plastic to avoid dust, even her mobile phone). but I am really annoyed when my dad is being stopped from doing things he enjoy doing, and my dad is a really soft person so he just tolerate whatever she said, she is stopping him driving around because she thinks driving means subject to accident risk, he was not allowed to exercise at the place he wants. Even though she can give her own reasons on every single things, I cant agree that life is about being logic, its about enjoying life, especially when it comes to personal preference.
My mom yet to acknowledge she has dementia, she just said its only short of memory, but from the workshop i attended, she has dementia symptom: forgetful, repeats on her Idealogy, and easily get emotional and express it in front of the public.
My dad used to stays with her and looks very unhealthy and lack of energy, which after that he move to elsewhere to work for a friend, and he become much mentally younger, healthier and happier, but he was retrenched and going to move back in with my mom next month, so I get kinda worried. I plan to get a car for my dad so he can went around to meet friends, but dunno if my mom gonna stop him from doing it or wrap up all the seats of the car with plastics.
How does a wife with dementia strip a husband of his freedom? Do you mean that she insists he stay with her around the clock? That she insists only he can do something the right way and no one else can? She insists he can't do certain activities -- do you mean like golfing or fishing? Or watching certain shows on tv? Or what?
Could you explain Dad's loss of freedom in a little more detail? I lost a lot of freedom as I cared for my husband on his 10 year journey with dementia. It was the dementia that caused the changes in our lives, not my husband. And I worked at retaining as much freedom as I could, in spite of the disease.
Who is the "we" who wants permission to ignore Mom's suggestions and do it "our" way? Is this you and your Dad, or you and siblings, or ... ?
No one has to follow the suggestions of someone with dementia. In fact, doing so would often be irresponsible. She is losing the ability to reason and to have sound judgment. Someone looking out for her dang well better have those abilities, and use them on her behalf! The person with dementia may be "always right" in the sense that it is counterproductive to argue with them, but doing everything they want may not make sense.
If you can explain in a little more detail what is going on, you may get some additional specific responses.
Having a middle man between oneself and the VA would likely only slow things down. The VA has all the info regarding policies and procedures and are more than willing to help, free of charge. BTW, I am one of those spouses, receiving financial assistance and the elder does not have to be in Assisted Living.
krayon, I am curious what *instructions* does your Mother imposes on others? Could it be that Mom did all the work and caring inside of the home, and now that she needs to be cared for, your Dad doesn't know what to do?
My Dad is clueless around the house.... I know when I bring my parents' groceries to them, Mom hurries as fast as she can to put the groceries away, apparently she is afraid Dad will try to help and put things where she wouldn't find them ;) For 96 years old she moves pretty quick !!! She's trying to get Dad to learn how to do the washing/drying, and trying to do simple things in the kitchen. Too bad she didn't do that 30 years ago when Dad first retired, but the house was her domain for all those years while Dad was at work.
If the marriage was equally based, where each tried to understand the needs of the other, it may be the dementia speaking. I would try to accommodate your father's needs as caregiver. Perhaps sending mother to a day care facility during the day hours, limiting his caregiving duties and hours. If he gets worn down he can't help her or himself.
She will have to adapt as she is his dependent as well as his spouse at this time.
Good luck.
And as far as EvaLynn's comments, I had someone from the VA and they are not on our side, they dont want to really help. Once I hired someone outside of the Veterans, my Mom was receiving money within weeks. As far as finding a home for our parents, I totally disagree, have you worked in one and seen what they are like behind closed doors, even in the top nursing homes? At-Home help is #1 the best thing we can do for our parents. The more I hear how wonderful a parents nursing home is, the more guilty I know that child feels putting them there, they are kidding themselves. They have no time to feed someone for 90 minutes or more, time to chat, hold hands and give them wonderful long bathing and family time. In fact some are outright verbally (or worse) nasty to them egardless of their reputation. They are treated very different when YOU are looking, but not later on. I think assisted living for those without dementia is great, but for those with it, who cant do things themselves or even advocate for themselves, they deserve better, they are our parents. Its not easy for sure, but again, they're our parents. Also the medications can also aggitate them. I work closely with a neurologist and he uses depakote on anyone with dementia symptoms of aggitation. Aricept can make them more aggitated, etc, they need something to calm the brain.I know its different for everyone for sure. Good luck to all caregivers!!!
"I can't begin to express that it is very important to personally contact me for the VA information vs calling the VA in your area. I may be able to help get this information processed much quicker."
I can't begin to express my confusion and outrage at the audacity of someone trolling for business on a forum like this. Obviously you're not going to be doing this for free, or are you? It's my understanding that those who solicit potential clients to allegedly assist with VA applications cannot charge for doing so.
While you may actually have an altruistic interest, the concept of contacting and providing highly personal financial information to someone who uses a online forum like this is ludicrous.
That kind of assistance is offered for free at county VA centers, and by some veterans' organizations. Why in the world would someone contact a complete unknown, via an internet connection, and provide personal and confidential financial information? And what are your qualifications? Being an Advocate means nothing - it's merely your own statement of your alleged qualifications.
I find your approach distasteful and insulting if not exploitive.
Care Givers: Our parents have always taken care of us. It is now our turn to take care of them. This by no means is going to be an easy journey. It is very important for a person to leave their guilt and personal feelings at the front door. A child or family member may wish to take care of their elderly parent. Even though this may be a very kind and thoughtful idea, this decision normally does not work. I would highly suggest visiting Care in our area and hire a Care Giver. There are well experienced individuals on this particular site that can be hired between $10-$15.00 per hour. What must be learned through this process is that a child or family member must now become a very good "little friend" to the elder and not just a member of the family. Think back to your childhood and how you and your little friend had a lot of good times together.
Dementia/Alzheimer's: This is a very difficult time for any elder who knows they are in the throws of loosing their independence. A person's brain that is experiencing dementia mostly remembers things that have happened in their past. It is very hard for their brain to remember immediate things that are happening or that has been said. The beginning signs of knowing that a person is entering the world of having dementia begins to start falling and they find a hard time finding words to say. Sad to say but this causes an elderly person with dementia to become very irritable, suffer stress, depression, become uncontrollable, combative, and lash out in anger. What I suggest is asking the elder's PCP to give a referral for a General Adult Psychiatrist. Tell the elderly that they are being taken to a specialist to review the immediate medications being taken. Even though the Psychiatrist will ask the elder various questions, be prepared to provide the answers not the elder. Only as a suggestion, ask if the following medicines can be prescribed for the elder to take: Ramron, Aircept, Trazadone. It is important that the lowest dosage is first prescribed. These medicines can be increased as needed. These medicines work like a miracle in calming a person where they are more loving and not so controlling.
Assisted Living: The worse thing to do is not to do anything. I highly suggest that you start doing a research for Assisted Living facilities in your area. The problem is that most of us know that this time is going to come. When this matter is delayed, there will be a very strong rude awakening. You are now in what is called the "sandwich" group. You are going to be between trying to live your life, trying to take care of your loved one, and constantly trying to figure out how you are going to manage all of this. When an elderly couple is primarily entering the world of dementia leading to Alzheimer's, one cannot basically take care of the other. I can't begin to highly stress enough -- research, research, research -- don't wait until the last minute.
Assisted Living - There are kinds of AL. It is very important to have a list of questions to ask such as: What is the "Daily Plan", Amenities Available, Staffing (RN and DR on board 7/24), Nutritional Dietician, and other services such as Hospice, Wheelchair Accessible Showers, Aging in Place, Respite Offered, Complimentary Transportation, and Resident Parking. What is highly important to ask is if daily vital signs can be taken for the elderly including Blood Sugar test.
Note that an elder's PCP can request Home Health Care to visit every other day or 1x per week to process the Blood Sugar test.
Medication List & EMS: What I would highly like to suggest is that the elders have typed for them the following information. This information needs to be given to the elder's PCP. A copy of this information needs to be tacked by the entry door of the home to give to EMS. If this information is not provided, the elder is given whatever medicines the doctors at the hospital wish to give them. If the wrong med is given to an elder, it could kill them.
1) List of all medications they are taking, dosage, and how many times per day.
2) List of all medications that they are allergic to.
3) If an elder who is experiencing Dementia or Alzheimer's who is living in their home, a Medical Alert System needs to be in the home. These systems are not expensive and they are life savers.
4) List of all important contact phone numbers.
EMS & Hospitals: Always phone EMS to have oneself or elder taken to the hospital. Otherwise, it could take up to 24hrs. to be admitted and seen by a doctor.
When EMS takes an elder to the hospital, ask if there is a unit for the (elderly).
The elderly are seen more quickly in this special unit.
VA: If your father was active in the military service, there may be a possibility of the elder to receive "Spousal Financial Assistance". There are certain policies and procedures that need to be followed and met. Please note that an elder must already be living in Assisted Living. I can't begin to express that it is very important to personally contact me for the VA information vs calling the VA in your area. I may be able to help get this information processed much quicker.
Please note that I can only share my experience with you. It is up to each of us what we decide to do for the elderly and loved ones. It is very important that a person taking care of a loved one take care of them self through the process. There will be times that taking care of a loved one can be over-whelming. This can all be successfully done by putting things in order and in place.
My prayers are with you and your family.
Sincerely, Eva Lynn P.
Can you get your mother to go off to some day care facility to give him a break. and in that time , get the chores done that she claims are not being done properly.
IF she has progressed sufficiently to be constantly complaining but not really remembering then I guess its that game of agreeing with her, but doing what you feel is best. So I guess its time to 'ignore' your mom and concentrate on your father and see that he gets a break, either by other members relieving him several times a week, or being a companion for him at least. or organising the break