Member Profile

Carol, I think that we all go through the periods where we think that we are losing control and can't take it anymore. Yet, we are the heros. We are the ones that keep getting up every day and take ...Read More

Carol, I think that we all go through the periods where we think that we are losing control and can't take it anymore. Yet, we are the heros. We are the ones that keep getting up every day and take one more step to do one more responsibility or duty. It is who we are. We are special and unique and we rarely take the time to pat our selves on the back to say, wow, I am doing a great job, no matter what anyone else thinks. If it wasn't for me, my mother would have been alone in a nursing home for 10 years, with infrequent visits and would die alone. At least I know that I keep showing up like a bad penny just to check on her. It is the one thing that we have: our integrity and morals. It doesn't help much, but a little bit.

Recovery.

Thanks Carol: I agree with you; he is afraid of losing me and is terribly jealous that I can supposedly go on with my life once my mother dies, but it isn't so, I've lost ten years in the workforce a ...Read More

Thanks Carol: I agree with you; he is afraid of losing me and is terribly jealous that I can supposedly go on with my life once my mother dies, but it isn't so, I've lost ten years in the workforce and still have to tend to his needs.

I have been in therapy for years and even took a class called Peer Support Specialist which teaches you how to listen to others who have a myriad of problems and are seeking counseling for them. Intellectually, I know what is going on, emotionally, I am running on empty.

I told him that I was going to see the Arizona State Representative for the National Federation of Caregiving Association this week and he wanted to go with me. I just told him that I had two and a half days and he would be mad sitting in a hot apartment while I went to see my mother and also see if I can become an advocate for the rights of caregivers.

We are a group that needs to unite and demand that we be treated fairly by the government. We are providing a service and not only do we get no renumeration for it, we lose everything, insurance, social security, job security, impoverishment for the future, our lives with our kids. I could go on, you all know what I am talking about.

Recovery.

Although reading about other's trials and tribulations should make me feel better, I just find that I feel more isolated. I am not happy about the years of caregiving that I have given to my mother, w ...Read More

Although reading about other's trials and tribulations should make me feel better, I just find that I feel more isolated. I am not happy about the years of caregiving that I have given to my mother, who never appreciated my sacrifices. My husband never let me get away to re-center and get refreshed and I wasn't able to maintain friendships with old or new friends.

My husband is so protective of me, I can't go anywhere or do anything without him. Sometimes I just want to get away. I'm tired of everything revolving around him and his broken back and prostate cancer. That isn't to say that I don't care, but it is sucking all of the life blood out of me.

Everytime I insist on visiting my mother with AD in another city, alone, he and I have a huge fight lasting for days. I just want to give up.

The government isn't giving us any support, and I deathly afraid of being destitute when my husband and mother die. I have been searching for a job for over 3 months, but my husband won't let me look for a job in Phoenix and the little town where I live has a Walmart and Home Depot. My degree is in Health Care Services, but I am not a practitioner (nurse, CNA) and the other positions require a master's degree, which of course he objects to.

I need to do something positive with my life and as I get older (53), I find that I am running out of time. At times, I don't even care if I do die. I am not saying that I am suicidal, just that I am weary of the years of caring for others without taking care of myself.

Recovery.

As I read all of the emotions, pains, problems and just day-to-day living adjustments, I have to say that after 15 years of caregiving, I am now at the angry stage. I feel that I have been robbed of m ...Read More

As I read all of the emotions, pains, problems and just day-to-day living adjustments, I have to say that after 15 years of caregiving, I am now at the angry stage. I feel that I have been robbed of my career, my enjoyment of life, caring for a mother who really never appreciated me, siblings who cut me out of their life, and a husband with prostate cancer, depriving me of marital relations.

I want to get all of the caregiving organizations together, along with caregivers who don't belong to any organization and have them organize into a Political Action Group, where we force the federal and state government to give us help.

How many of you have lost your insurance and can't get new insurance because of pre-existing conditions? How many of your children have suffered because you spent too much time with caregiving responsibilities while they were growing up? What about the discension in the house because of the time spent away from your family? What do you do after your parent has died (or husband) and you can't find a job, especially with this recession? Where do we go for help? So many people say try Alzheimer's Association or another group specific to a disease, but other than becoming educated about the disease, I don't feel like I have any friends or hope or help. I am falling into a deep depression which is something that I have fought long and hard to avoid.

Any help you could give would be appreciated.

Recovery

I too have dealt with the depression, chronic pain, frustration and coming to terms that you will never be the same person that you were before with my husband. My husband had an accident in 2002 when ...Read More

I too have dealt with the depression, chronic pain, frustration and coming to terms that you will never be the same person that you were before with my husband. My husband had an accident in 2002 when he was volunteering for a fire department. The water tender he was driving rolled over about 3 1/2 times leaving him with a broken back that just keeps deteriorating over the years.

If he isn't dealing with the normal reactions of grief over what he used to be able to do, anger over the prospects of the future, and limitations on what he can do as far as providing for his family, finding any enjoyment in life, he has to deal with the effects of being on Fentanyl patches and break through oxycodone pills. All of these contribute to a person who is very unhappy, and who could blame him?

I have been married to him for over 20 years when this occurred, at the same time taking care of two teenagers, and my mother, who has Alzheimer's. It was and still can be a very difficult period to get through. I can tell you that I have thought about other options, but just as in caregiving for a parent, you can't give up the responsibity, regardless of the cost to you. I will be honest and tell you that I am not happy a good part of the time, but I have found some wonderful resources that have made me grow and find strength that I never knew I had.

Learning became my biggest escape. I earned my B.S. in Health Care Services to learn how to use the health care system to my advantage and my familiy's advantage. I also started seeing a therapist and went through a training program to become a Peer Support Specialist, which is a volunteer that listens to other people in crisis. A PSS is a person who has been through the mental health system and knows what the other person is feeling like and can provide support, even if it is just to listen.

I learned how to become the strong one in the relationship, develop skills to fix broken items in the house, learn how to be patient, and also learn when to walk away when the abuse got to be too bad. I knew my husband wasn't really yelling at me, it was his life and part of the grief process. I still go through the grief process too, but I know that I am a person who can be counted on to follow through on what needs to be done when a loved one needs you. You need to keep that in the back of your mind. You are developing strength and character and taking care of the infirm, just as Jesus wanted us too. The pay-off doesn't seem to be worth it, but I think that is because we are looking at just today, not the future.

If you need to get away, do so. I read a lot and that helps. I live on a creek and often go down there to get away from the turmoil. I am turning all of my negative experiences into a positive experience by using what I learned to write a book to help other caregivers. All that it takes besides a little strength is a will to see the positive side. Since you aren't married, it is a serious step to decide how long you will stay with him. Being paralyzed will either cause him to become a bitter old man, or hopefully decide to find out what he can do to enjoy life and maybe help others. Whatever he decides, you can't let his reactions ruin your life. Easy words of wisdom to give, but very hard to practice.

I do pray for you and hope that you can get through this period.

Recovery.

Lolliegoogle: I can't believe that your own parent would kick out their parent and place the burden on you. Life is certainly not fair. I also feel sad about how your grandmother must feel, not bein ...Read More

Lolliegoogle: I can't believe that your own parent would kick out their parent and place the burden on you. Life is certainly not fair. I also feel sad about how your grandmother must feel, not being wanted by anyone.

Since it seems like your family is playing kick the ball with your grandmother, I think that it is time to have a family meeting about just who is the primary caregiver and should be responsible for all decisions. This person then should have the legal documentation prepared giving them the authority to make decisions for your grandmother and act on her behalf.

As far as the living situation is concerned, you need to find out what your state's Medicaid program eligibility requirements are in order to see if long term care will be paid for by the state. There normally is a maximum amount allowed for monthly income and maximum amount of assets that are allowed before Medicaid will pay for long term care. If your grandmother's assets exceed the maximum amount of long term care, there are ways that you can spend down that sum to meet the state's eligibility for LTC care; however, it normally has to be done over a period of 3 to 5 years, depending on the state, and depending on the amount of money. You may need to see a financial advisor or social worker from the Medicaid department of your state for exact specifics.

Here are some agencies that can help you find out more information, especially relating to your state:

Administration on Aging www.aoa.gov (1-202-619-0724)

Centers for Medicare & Medicaid Services (Provides information on location and quality of nursing homes) www.medicare.gov (1-800-633-4227)

Eldercare Locator (also helps find quality services for seniors) www.eldercare.gov (1-800-677-1116)

Long-Term Care Ombudsman - each state has their own ombudsman that you can find by searching on the web for State Ombudsman

Department of Health for your State

National Family Caregiver Support Program www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp (where you can turn for support and assistance)

National Family Caregiver Support Program State Websites (gives you links to NFCSP websites in each state (www.aoa.gov/prof/aoaprog/caregiver/careprof/state_by _/CG_Stat_Websites.doc

Because each person's situation is unique, it may take a little time to decide what is the best way to proceed, and these agencies can give you options available for different problems.

It seems that your grandmother needs someone who will be her advocate and provide care (regardless of where the care is given) that is in her best interest. Just because she is living with you now doesn't mean that you have to be this person, however, it should be part of the decision-making process on deciding who will be the primary care giver.

Good luck.

Recovery





Hopefully your grandmother's health won't require skilled nursing, which is the most expensive care in long term care. Assisted living facilities are generally less expensive and set up like a residential home, with up to 10 people living in the home and 24 hour caregiver support is a portion of the rent paid.

Emacmahan: The first thing I would do is see if you qualify for your state's Medicaid program

Carols3TJC: If you haven't obtained a Power of Attorney for your parents, now is the time to get it done. It is obvious that your parents are in danger living alone and need to be in a facility that p ...Read More

Carols3TJC: If you haven't obtained a Power of Attorney for your parents, now is the time to get it done. It is obvious that your parents are in danger living alone and need to be in a facility that provides safety for them, such as air conditioning.

If you have trouble getting them to give you a Power of Attorney, because they fear that you will place them in a facility, then you can do what I did: I had a specific clause that I couldn't place my mother in a facility unless I had the opinion of two doctors who recommended the move for their own safety and protection.

After you receive this document, then you take your parent to the doctors and get their doctors order so that you can make the decision that their welfare is in danger.

This is just one way to go about it.

Hope it helps.

Recovery

Do you think that you could invite your father over to your house to help you with gardening and other things that he used to do? He may just miss being with you. Providing him with the opportunity t ...Read More

Do you think that you could invite your father over to your house to help you with gardening and other things that he used to do? He may just miss being with you. Providing him with the opportunity to do things with you on a limited basis may be enough to lift his depression.

Recovery.

Is it possible to use her income to build a guest house for her so that both of you have privacy?

Can you improve your bedroom so that it is your own private space where you can go and clos ...Read More

Is it possible to use her income to build a guest house for her so that both of you have privacy?

Can you improve your bedroom so that it is your own private space where you can go and close the door to get away from everyone?

I would also suggest seeing a therapist where you can safely vent your feelings and perhaps discuss other options that you and your therapist can come up with once the therapist knows more details about how this situation developed and still continues.

Recovery

I hate to harp on the same old subject, but because of the problems I experienced 8 years ago when my mother finally was diagnosed with dementia, after years of actually having it, and the horrible pr ...Read More

I hate to harp on the same old subject, but because of the problems I experienced 8 years ago when my mother finally was diagnosed with dementia, after years of actually having it, and the horrible problems experienced with my siblings, I cannot stress the importance of getting your Durable Power of Attorney, Health Care Power of Attorney and mother's Will prepared. If you are taking care of her, you have to take the bull by the horn and have the tools needed so that you can make the decisions needed to keep your own sanity and life. Without these documents, if you think your life is hard now, you will be shocked at how bad things can really get when you need them and don't have them.

Sorry to be repetive on this issue, but experience is a great teacher and I wouldn't want anyone to go through what I had to go through. However, before you do this, think long and hard about whether you want to or able to be the primary caregiver. Just because your mother lives with you now doesn't mean that you have to take that responsibility on. I read an interview by Dr. Fine, who was interviewed by PBS. He said that primary caregivers really need to have a master's degree to deal with the myriad of issues that they need to deal with: lack of an integrated health care infrastructure, discerning the type of doctor needed for your parent, insurance and prescription insurance options, tax preparation, problem behaviors, knowledge of when it is time to place your parent in a facility for his or her own welfare, or your own welfare, ability to see when you are out of balance and spending too much time with your parent and not enough on your own family, financial planning for the future, monitoring of the facility that you placed your parent in, recognition of potential elder abuse . . . The list is endless.

Whoever thinks that caregiving is an easy task is someone who needs to experience the total responsibility of someone's life themselves. That is why I don't trust most books that are written by doctors and therapists who haven't actually been through the experience themselves. Books can only teach you so much.

I am glad that you are seeking medical attention for your own problems. You might also consider that your pain may be your body telling you that the stress that you are going through could be due to problems with caregiving. Our body is quite adept at telling us something is out of whack. Sometimes we just don't listen to our body.

Recovery

I understand what you went through. My mother also had early on-set dementia which went undiagnosed for over 6 years. The one good thing about having undiagnosed dementia is that you are able to get ...Read More

I understand what you went through. My mother also had early on-set dementia which went undiagnosed for over 6 years. The one good thing about having undiagnosed dementia is that you are able to get all of your advanced directives and wills signed because the parent appears to be normal, when they want to be. If I had to do it all over again, during those 6 years ago, I would get those documents so I could enroll my parent in an assisted living facility and adult day care. Waiting until you have the diagnosis creates a situation where you may have to get the courts involved to appoint you guardian, taking away what little money may be left from your parents. Legal documentation should be a priority so that you can get your parent the medical help that they do need.

Recovery.

I am 52 yo and sound similar to my mother. I am a very active person, but prefer to be active in my own house, housework, music, reading, landscaping, filing, computers. It has taken me years to expan ...Read More

I am 52 yo and sound similar to my mother. I am a very active person, but prefer to be active in my own house, housework, music, reading, landscaping, filing, computers. It has taken me years to expand my ability to trust people, and if I did have trouble hearing or seeing, or found their conversation inane, I probably would turn down social activities also.

What you and your daughter do is absolutely fine for both of you, but as you age, you enter a stage of contemplation and don't necessarily need something or someone else to entertain you. I hate it when my husband and kids insist I go to the movies or dinner with them. It just isn't fun for me.

The only suggestion that I would have for you is to search the web for the incidence of suicide among the elderly. You will find the signs and symptoms of elderly who are at risk for suicide. But just because your mother doesn't enjoy the same activities as you doesn't necessarily mean that she is depressed. For your own peace of mind, research suicide and elderly and than accept that she is happy with living her life the way she wants (as long as she poses no danger to herself or anyone else).

At least that is my opinion. Everyone should have the option to livetheir life the way that they want.

Thanks Sooz for your wonderful response. I think that people who have agreed to become primary caregiver and know what other caregivers are going through are the few people who understand how painful ...Read More

Thanks Sooz for your wonderful response. I think that people who have agreed to become primary caregiver and know what other caregivers are going through are the few people who understand how painful the situation is and how sometimes you feel that hope doesn't exist. Since I don't have any family members to turn to, I have become completely isolated, but during the last year or two, I have found solace and peace through God. Perhaps that is what I needed all along and didn't realize it. You certainly don't get thanks or appreciation from your parent. I'm lucky if my parent looks at me. But, I am no longer offended. This is just another symptom of dementia and out of my control.

When you tend to be a Type A personality and spend your life striving for perfection and controlling situations that are distressful for you, dementia brings you to your knees in a hurry. It is truly a disease where the best that you can hope for is that your parent isn't experiencing any pain.

One major change that I have made in my life is to stop looking at the negative and try and find the positive in people and situations. That does help a lot.

Can you share some of your experiences with me?

Michele/Recovery

I have been taking care of my mother, with AD and MID for 15 years, and my husband, who has a broken back and cancer for 6 years. I have 2 children, 19 and 22, who were neglected by me during their fo ...Read More

I have been taking care of my mother, with AD and MID for 15 years, and my husband, who has a broken back and cancer for 6 years. I have 2 children, 19 and 22, who were neglected by me during their formative years as teenagers because of all of the demands I had taking care of my mother and husband.

I live in rural Arizona, where there are few to no jobs available. I have a degree in Health Care Services and want to work with families/caregivers get through this difficult period of their life.

I started to write a book about all of my experiences, focusing on the mistakes and then followed up with a better way to handle the incident.

The trouble that I am having is that bringing back all of the pain that I have gone through taking care of my mother: such as being accused of stealing all of her money, my siblings believing I did and cutting off all ties with me, and my children and husband resenting my obligations to my mother.

Even when I do complete the book I don't know how to go about editing, publishing, or marketing it. I am just not sure that reliving each painful period over the last 15 years will do anyone any good. Yet, I know that what I have learned by experience can help others.

Does anyone have any ideas on how to reduce my pain and have hope that my efforts will succeed in helping others? It is rather a strange request, but once you complete the caregiving process, you kind of flounder and wonder, what do I do now? I have been so stressed out and exhausted for years that my ability to think rationally may be compromised.

Thanks for your words of wisdom.

I have been caring for my mother and husband for over 15 years now and also got a B.S. in Health Care Services during this time. I know how important education is when you are trying to care for a par ...Read More

I have been caring for my mother and husband for over 15 years now and also got a B.S. in Health Care Services during this time. I know how important education is when you are trying to care for a parent and constantly run into problems where you don't even have a clue who to turn to for advice.

I started writing a book on my caregiving experiences, because I want to help others and there is so much information that focuses on the elderly, but very little that gives practical guides for the caregiver.

While I was doing my research, I ran across these statistics: The highest suicide rate of any age group occurs in people 65 or older. A study conducted by the National Institute of Mental Health, published in 2007 in the Journal of the American Geriatrics Society, stated that people older than 65 represent 12% of the U.S. population, yet account for 16% of successful suicide deaths (NIMH, 2008). Many of the symptoms that should cause a red flag to you that your mother is seriously depressed is her total isolation and withdrawal from everyone, including you. If she recently lost a spouse, or has no one to do enjoyable activities, she may like there is no reason to live as her health continues to decline. Many older people who are diagnosed with a life-threatening disease are also susceptible to suicide.

Unlike suicides of other age groups, the elderly are are far more successful in their attempts to kill themselves.

My advice to you is to have her see a geriatric specialist and a psychologist. The same journal listed above also published the statistics of elderly who were successful in killing themselves and had seen their doctor within one week of the event.

Another point of interest you should be aware of is that our parent's generation do not admit to having feelings of despair or suicidal thoughts. To them, it is a sign of weakness or craziness. She could also be afraid that you will place her in a nursing home, so the likelihood of her confiding in you may not be very high.

If I was in your situation, when I scheduled the appointment with the doctors, I would ask to see the doctor alone first, describe the situation, and then leave so that your mother can talk to the therapist alone.

When I took my mother to get an evaluation of her dementia, I made the mistake of not going to the doctor's with her. The doctor responded with a nasty scrawled note that my mother had no brain organic disorder. Four months later, she was diagnosed with 2 forms of dementia at a facility that specialized in dementia - do not always trust the doctor. Trust your gut feelings, they often are more accurate than a doctor.

I hope this helps you.

Manonthemove's Wall: I have been a caregiver for my mother for over 15 years. She has early on-set dementia. The experiences that I have lived through have been painfull, stressful, and exhausting.
 ...Read More

Manonthemove's Wall: I have been a caregiver for my mother for over 15 years. She has early on-set dementia. The experiences that I have lived through have been painfull, stressful, and exhausting.

In retrospect, I can tell you that one of my biggest mistakes was not maintaining balance in my life. By that I mean, I spent more time and energy on my mother, when I should have spent it on my children and husband. My teenagers got into drugs and drinking and I was so exhausted and felt that there was nothing I could do about it. I am now dealing with the aftermather of 10 years ago, but I would definitely suggest that you always keep in mind that your priorities are your immediate family.

As far as your spouse, I have been through the mill with this also. Two years after my mother moved into our house, my husband was involved in a rollover accident that nearly killed him. His recuperation lasted over 6 months.

Being a Type A personality, I convinced myself that I could still take care of the family and myself. I could not have been so wrong.

I quit eating. I haven't been able to maintain a weight of 100 lbs. in over 2 years. My children and husband resent every minute that I spend with my mother, who now resides in an assisted living facility 2 1/2 hours from me. Every month when I went to visit my mother, my husband and I would have huge fights lasting for days that not only exhausted me, but prevented me from taking care of everyone.

As harsh as it sounds, you must remember that your parent will die, but your children have a future and it is your responsibility to make sure that they keep on the right track. If we ever do get our lives back, it would be nice to have our spouse, so caring for your spouse has to become your top priority.

Dealing with the guilt and time management is difficult but can be done. I wish you luck

Michele