My Mom was diagnosed with the beginning of end stage Alzheimer's 6 months ago, and my Dad was diagnosed with stage 6 Dementia (on a scale of 1-7) 2 months ago (after a bad fall and serious head injury). Both are now in the same Memory Care facility. I am their only caregiver and live 9hrs away.

I have been responding to emergency events for over 3 years now. While it's a relief that they are both in Memory care now, there is a new set of stress settling in in the form of paying for their care, selling the house, cleaning out the house....and the tremendous guilt that floods me everyday. Guilty for not being stronger 3 yrs ago and forcing them to move closer to me, for not leaving Dad at his rehab facility after he fell as having them in separate apts in the same facility still doesn't seem to be working, for not being with them the last 3 yrs to ensure they were eating right. The list goes on and on.

For me, support groups and online forums haven't helped. They have actually made me feel worse, it has made my guilt deeper. I feel attacked. I'm not even sure why I am posting here, except for the fact that I rarely hear about situations where both parents have Dementia.

There are few friends and family that truly want to listen. They are nice and ask about my parents, but the minute I cross into more than "they are still adjusting to their new home...." they retreat usually. The most beneficial source of advice and support has been the Alzheimer's 1-800 help line. I call often. I never feel worse after those calls, I always feel like I can keep going another day.

My heart goes out to those struggling with more than 1 loved one with Dementia or any illness. While having 2 doesn't lessen the burden of those managing care for 1, it does cause a unique set of medical, financial, legal and logistical challenges. Often times I don't know where to start, but try to get a good nights rest, make my list and start with the most pressing issue. If I get through 1 issue a day, I feel like I'm making progress and just press forward as best as I can.

Getting outside and enjoying events with friends and family also help add normalcy to my life, which is desperately needed to keep from falling down a deep hole that I can't crawl out of.

When I call the Alzheimer's Association, they often ask me: What keeps you going? I usually start crying, because I never have an answer. The best I have come up with is, "I don't know any better, I just keep going". But as I reflect more, what keeps me going is knowing that I have lived in an extraordinary situation, and I have knowledge and hope that I can pass on to others to help make their journey's just a little bit better. My "light at the end of the tunnel" is to get to a point where my journey supports other's journeys. Where my story helps just 1 more person get through 1 more day.

Sending hope and love to all of those caring for others.

I'm 100% disabled, taking care of a dad with vascular dementia and then my mother who was taking care of him, jump-hop-skipped over him so fast and now is worse and has Alzhiemers. It was brought to my attention a couple months ago that she wasn't balancing their 2 checkbooks and when I found out I increased my visits to them to daily and my life went into overdrive, 8-13 hours a day, 7 days a week, week after week after week, taking care of EVERYTHING for them!! I'm sad, I'm tired, I suffer from severe chronic pain from a back injury and 2 unsuccessful major back surgeries, but now have tumors on my spine, fibromyalgia, osteoarthritis, and a foot that needs an operation (and normally am only good for 4-5 hours a day), and Complex PTSD (the worst kind you can get, which means I can't handle much stress - which is ALL I've been handling the past 2 months especially since things fell apart) and depression, ADHD and ADD, high blood pressure and more. I finally hit the wall this past week, lost my voice, could walk due to my back which felt like it was broken, and bad chest pains... and was flat on my back for 2 days. I managed to get up and shower yesterday and worked at my parents for several hours (I live 1 minute away). My table and kitchen bar are stacked to the hilt of "to-do's" and I am grumpy, so stressed out I can't think straight, always apologizing to everyone, and cry 1-2 times a day just at the helplessness I feel. Tonight my otherwise wonderful husband whom I've been married to for the best 15 years of my life, told me he'd had it. He can't take the stress anymore. He told me either I leave or he will. I can't talk my parents into home healthcare, and have to get drs. letters to get them into assisted living (my dad's 1st appt. with his new dr. is May 8th, so I'm stuck until then). So, now the stress is ruining my marriage! I've been having such terrible chest pains I can't see straight and my pain never gets lowered because I never rest except when I sleep. I found a book Final Exit and a hand-written note about how many pills of something to take to just go to sleep, "not throw up, and just die" - at my parents and I took the note knowing they'd think they lost it. They don't know how to even run their thermostat anymore! I walked in twice now to sweltering heat in their home. I turned the air conditioning on (they have central air and can use heat and the air conditioner in the same day if they want) one time, but yesterday they had the heat on, but thought they had the air conditioner on (even tho' you could feel the hot air coming out!). I was flabbergasted. I worry all the time, can't keep up with stuff at home, and am at the end of my rope. They have a rather large estate, so the amount of work is enormous!!! Now, my partner, my husband, my best friend and love of my life wants me to leave! How does anyone life through this!! My brother committed suicide in 2001 (my only sibling) and my parents shunned me for 15 yrs without a reason. I wrote them for 15 years and only rec'd silence. Then 2 yrs ago they popped back into my life (after I had a mental breakdown because we moved back to the town I grew up in where they live to care for my husband's deceased wife's elderly mother, and I'd see them in public to be just further shunned by them both, and went thru an extensive 2 yrs of therapy and had FINALLY after 15-plus long and painful yrs. gotten over them. I was happy and finally moving on with my life. Then June 2016 "ding-dong." My parents. I always had written & told them my door was always open to them. They walked through my door into open loving arms. I thought they loved me again. Then 2 weeks later they gave me my Power of Attorneys for both of them and a copy of their Living Trust. And it's been pure H*ll since then. It really took off tho' 2 months ago. Now I'm losing my marriage because of it. I honestly can't take anymore and I don't know what to do!!! Help!!! I feel like curling up into a ball and just dying!!!

I too have two demented parents who insisted on staying in their own home. I moved in to their home to be their aid-caregiver. Talk about a challenge!, I had no idea what was in store for me as their cognitive decline increased. I immediately joined a support group, scoured the Internet for information on Alzheimer's and dementia and read books and talked to others to gain insight for what was ahead. I planned a family meeting, forced the folks to tell me their wishes, found out where all the import papers were, met with an elder attorney, evaluated and located finances, went over living options and had the talk about what final wishes were when parents were in the MCI state. Even with all the preparation, most of my family was still in denial that anything really needed to be done at that time. I often heard, "we will deal with that when the time comes". It was extremely stressful to me to not only be dealing with the day to day running of their home, being their driver, managing their meds, managing their medical care and appointments, shopping, cleaning, cooking, repairing their home, being their social coordinator and arranging stimulating activities all while having little support from other family members who believed I was exaggerating about what was happening in the home of my folks. Knowing what was coming by going to seminars and lectures and by talking to others who were further along in their caregiver journey, I wanted to be as prepared as possible for what was coming. This was over 2 years ago. What I learned is even with preparation, the day to day challenges of caring for 2 people by yourself in their home is overwhelming. There is no break when you are there 24/7. The dynamics of you trying to be in charge in their home, their rules and you having to flip parent/child roles is difficult to say the least. My health suffered, my sanity suffered,and my social life suffered. However, I did learn what NOT to do to my own kids. I got my own affairs in order, made my end of life wishes known and figured out why people move to senior complexes. I'm 55 and plan on moving into a senior community that has independent living, assisted living and memory care all in one place so that when my turn comes to need help, I will be where I need to be and it will be easier on my own kids to deal with me aging and possibly needing memory care. I mean if there is a genetic part, I have it coming at me from both sides! As I found out by living with my ill parents, even with the best of intentions to remain in one's home, there comes a point when hard choices and decisions need to be made. When adults are still living in a house, there is very little you can do to force them to move short of going to court or having them declared incompetent. I don't know about any of you, but taking my own family to court is not high on my wish list. Anyway, bottom line is trying to do what is best for the folks, may not be best for yourself. I urge you to weigh all options before committing to the undertaking of being a sole caregiver.

To carol I totally get you I'm in the same situation and trying find resolution such as resuming work, and continuing to care for children! I feel alone caring for two children and two parents all on my own! I can barely get any work and all work must be done from home so not sure where to go or what to do!

Hi Joannes,
Even though you haven't had to spend your money for your parents, you rightly worry about what happens after all of their money is gone. As you say, what at one time may have looked like a nice retirement can be gone in months once one or both people in the marriage have been admitted to a nursing home. Many of us have gone through that with our parents - watching everything they worked disappear in months. When that happens, Medicaid should be there. Our elders deserve dignified care. Your worries are valid and shared by many.

You also are rightly concerned for your husband and yourself. At this point, if it turned out that your husband needed nursing home care early (we hope not, but you expressed understandable worry about the cost) Medicaid has a formula for how much income the well spouse can keep. I'm not a Medicaid expert and we are talking quite far in the future, so I won't go into detail, but I understand your worry about the future of Medicare and Medicaid.

People who now depend on Medicaid especially worried. I have to have faith that somehow this country can deal with this issue in a manner that provides dignity to people like your parents who've paid their way for years only to lose everything to health care.

I wish you the best with your business. It’s hard to do all you do and also spend the time needed to run such an endeavor. I'm happy that you have faith and hope you have a faith community to help you cope. Please do keep coming back for the support and wisdom that exists in this extensive community.
Carol

To Carol, I just need to clarify re: finances....NO I do not have to use our own finances to care for my parents. I am POA for both of them, and I pay their bills with their money.....but we've gone through about half of their savings/investments in the last year trying to get coverage just for Dad's facility fee. WE (hubby and I) are in a not so secure position due to all the money from our own retirement savings that was lost in 2008....so we have very little saved and are living on SS income only, plus some income from this home business I work. I need this business to grow enough to be sellable in order to gain more savings to hold us over...but the business is down 50% due to the time constraints of helping my parents all the time. And, knowing how fast we've gone through my parents money, with still having MOM to have care for.....I cannot imagine the end of our lives, if my husband does prove to have parkinsons and it is not the slow progressing form and/or he moves into the dementia part of it too fast. How do I have potentially 3 patients in two different areas? And what happens when we are out of our own money and they are out of their money? And of course.....an even bigger fear with all that's happening in our country....what if our own SS and Medicare somehow are not there anymore, or end up being less income....and Medicare costing more money?? It is so easy to anticipate destitution. I am glad I have GOD in my life!

I'm so glad you found us! Two parents with dementia 5 hours away, using your own money for care, a husband with early Parkinson's - and you're wondering how the rest of us do it? You are amazing with what you handle.

Many of us have suffered huge financial setbacks because of parent care and other issues. We'll also relate to that.

As you already know, we can't fix your problems but we can relate and support you. Please take advantage of this incredible support community.

Take care,
Carol

My heart goes out to all of you who are doing any 24/7 caregiving...for one or for both....part of the year....or sharing with relatives....I just don't see how you do it! I've been handling things for both parents for 18 months. Dad with dementia, placed in a facility last January, so almost a year ago. Mom newly diagnosed last summer with early dementia now...Alzheimers....and home alone. I live 5 hours away and have the help of an eldercare casemanager and an eldercare attorney who's office helped get Dad qualified for Medicaid finally, last month. Yes...one goes through what money there is so fast it isn't funny. I am the only child, since my brother died at age 37. I am 68, married, husband may have early Parkinsons (and THAT IS depressing to consider!) and I still run a home based business. I am so stressed all the time, I cannot imagine if I had to add actual caregiving into the picture....and I am a retired RN! I've had to pay to fly daughters in x3 in the last year just to help me, because I couldn't be down with the parents AND meet the deadlines for all the applications and paperwork necessary for the Medicaid and VA work. Parents would have a crises....and I would miss a deadline, and it would start all over again the next month with submitting all the financial info. My business fell off by 50% this past year due to them....and the reason for the business to create something sellable to shore up our own lost retirement savings in 2008.....thank you Congress and government.... And, of course, NOW....I couldn't even look forward to any inheritance since it's all being spent for their care. It's not that I am upset about that...but I AM upset about our own financial future....that I cannot secure at the moment. Life is VERY frustrating and if I didn't have GOD in my life, I know I would break down over all this. I just know He won't give me more than I can handle. My parents are almost 92 and just turned 88. I just don't know what's going to happen next.....don't have much time to reflect on it....and generally just take one day and one crises at a time! I am glad to have this forum as I don't have many other resources for support.

I am caring for both my parents. Dad has vascular dementia and mom has dementia due to Parkinson's and no longer walks. I moved in with them a year ago with my kids, a teenager and a toddler. I am frustrated, angry, isolated, stressed... you name it... I don't have any help, plus my dad has always been a verbally abusive person, so, now with this condition is 50 times worse. He lashes out at me, at the kids, it's insane... And while everyone marvels at what great daughter I am for caring for them, I feel secretly guilty, because what I really want to do is put them in a home and get my life back. I can't work, I quit school, I can't date or go out with my girlfriends, and I can't do a lot with my kids anymore like we used to. I am only 33 years old and sometimes I feel like I'm 20 years older than that...

both my parents have Alz/dementia. My mom is in assisted living ($5400 month) Dad is @ home. My husband, brother, 1 hired staff & I provide round the clock care. we're running through their life savings like water. I'm weary & angry. Weary because I work full time then sleep lightly - my dad wakes up in the middle of the night "going home now" (he IS home)... Angry because the government they've supported all their lives puts a higher priority on the financial institutions that wrecked the economy than helping sick and suffering seniors.

Talk about having kindred spirits on this site ... yes, I am pretty much living with my parents even though my house is a block away. I fiercely believe that my parents should remain living at home for as long as they possibly can and we all know the difference when they have to spend time at an assisted living facility. At least when I have them at home, I am in charge of making sure they're getting the right medications and nobody is speaking to either one of them in a patronizing manner. You know what I think is the worst thing about burn out? We are so close to the situation we don't even realize how bad it is sometimes. For instance, my sister came to visit this past weekend from out of state and I went home and passed out for an entire day! I think what helps me, though, is that both my sister and I share the duties as Power of Attorney. Fortunately she takes care of the finances and will let me know if we can hire extra help --- she lives about 15 hours away so she couldn't be involved in any hands on caregiving even if she wanted to. I, on the other hand, am not all that savvy with money but I'm better equipped to make sure they get to the Dr and I am able to make sure they get needed services and stay safe and comfortable. It's about 4am and Mom woke up a little bit ago ... she went to the bathroom by herself but had trouble getting back in bed and fortunately Dad has a bellow that carries so once I was up - he wanted to know if I was hungry for a snack and of course that means he wanted something to eat :) So thanks for helping me unwind and now it's back to bed for me.

It's good to talk it out on this forum. No one can change another's situation, but talking does help. You are all having to cope with a great deal, and to be understood is something. I hope you can get some relief and some time for your own lives.

When these care issues go on year after year, many people burn out. It's human. You may get some relief if you go on your state's Web sites under aging services. There may be services you can get that you don't know about.

Carol

Brandywine40,
I understand. It is not the way I thought things would be at this point in my life. Caregivers should not have to be martyrs. I don't want to live my life this way.

yesterday was a bad day. My boyfriend tris to help, but REALLY what help is coming over and standing in the middle of the kitchen while I clean up soiled underware etc.
The frstrating thing is you try to have alogical converstion with mom. I know I can't but it doesn't keep me from trying. Yes, only adds to the frustration. Get up early- off to the dr. make sure she takes the meds, drinks the proper water, eats proper, and doesn't hide it in a draw-burned out and crying is how I portray my existance

My Mom lives with my sister and has for a year. Before that she lives by herself since our dad died in 2002. In 2005 she began thinking someone was pecking on the side of her house at night. My sister and I would take turns staying the night to see if we could hear anything, but nothing happened. We moved her out of her house to an apartment. She thought 'this person' followed her. We got the doctor to put her on Risperdal for paranoia. It helped a little and only for a while. We moved her again to a senior citizens apartment and she thought her neighbor was knocking on her wall all the time; thought someone was using a bullhorn outside yelling at her - which was not true. We moved her again into a two bedroom condo that I owned. She was fine here for a while, but then thought things were happening that were not. She thought a man from her church was interested in her but he wasn't, as he was married. It kept getting worse so we moved her in with my sister last year. She has done better but off and on has her spells where she thinks someone is talking to her. She has lost over 50% of her hearing and won't wear her hearing aids. She smokes excessively and we think this probably has a lot to do with her cognition. She also has CHF from the smoking but it is a battle we've given up on, trying to get her to stop. She is only 79. I don't know how much longer my sister and her hubby can keep her. They both work and Mom stays alone during the day which has worked out fine. But it has always fallen back to me to be the decision maker in regards to her care, as I am the oldest. I feel burned out, frustrated and keep a feeling of doom as to the circumstances. Until last year I was her only caregiver, doing her bills, taking her to the doctor and grocery store. She could not concentrate on what she wanted to buy at the store, so I had to do it. I did this all the time for 3 years until my sister took over a year ago, which was a blessing. I now worry about the stress it is causing my sister. She is 60 and I am almost 62. We aren't getting any younger and we are getting tired. Mom has no clue as to the stress she is causing.
Thanks for listening

I think there is a difference that needs to be honored in this thread between those of us who care for our parents at home and those who have them in facilities. I'd like to give a hug to everyone who is knee deep in care 24/7 - it is indescribable to anyone who hasn't done it. Having to turn around and come home because you are worried is a regular occurance - as is double checking, going outside for a cry and just feeling tired all the time. Feeling love and heartbreak at the same time when they are confused and you don't know what to say because you are dealing with your own feelings - that is hard. I wouldn't have it any other way because to me in my family it is the right thing to do.

So maybe the ones who responded first on this thread and are dealing with alot deserve our attention and encouragement because they are dealing with a reality that will not go away.

Blessings to all this holiday season

We are actually caring for three right now. Mom, dad, and a father-in-law. Or, I should say, the nursing home is caring for two of three. Except, we're there 3-6 times per week for visits or to take care of some need or other...with both my husband and I as Guardians, and me as Conservator for both of mine. This has consumed a lot of energy I would have otherwise used selfishly, so that doesn't bother me. Except for the stress, which does. But I am learning. I try to combat it with healthy alternatives, but worry and fatigue sometimes get the better of me. And sleeplessness is an issue at times, too. Grief is a huge factor, watching their decline. One parent has Advanced Stage Alzheimer's, another has Vascular Dementia, and a third with cognitive impairment. An interesting mix, these three, and a challenge for the three of us (my husband, son and me).

How do we cope? Spiritually, we lean on God and his word, who won't give us more than we can bear, and invites us to share our burdens, come unto him and rest. Blessings come, at unexpected times, to bouy us up when things seem tough. It may be a person's comment that encourages, or a thoughtful gesture help us over rough spots along the way. Another thing we do is rely on supportive professionals. These include Social Workers, Physicians, nursing staff, etc., and we tend to reach out a lot. I attend support groups, and connect on line, which has been a wonderful source of support. How do we cope? Sometimes, admittedly, not very well. But we ask for help, and in some form or fashion, it always is there. Sometimes, we cope one moment at a time. We all get tired, and need to set aside the time to rejuvinate our physical selves and spirit. Sometimes we push ourselves beyond natural limits, when the needs or demands of caring for others becomes great. I marvel at the restorative power of rest and prayer. And often we rely upon wisdom and strength beyond ourselves. Asking for help is usually always a good idea, for who should bear great burdens alone?

Thank you Carol... I suppose we are getting to that point... We are in the middle between Medicare and Medicaid... I think we have to loose the house to get Medicaid (Which we were trying to keep).

I thank you so much for your comments.

Li

It does sound like spiralli's parents would qualify for Medicaid, if they aren't already on it. Spiralli, you are genuinely overwhelmed, which is entirely understandable.

Medicare will not pay for nursing homes, but Medicaid does. If both of your parents qualify, that may have to be your solution. You cannot sacrifice your sanity and health for them. They would not want that if they could understand what is happening.

If you do find a good nursing home (and good is realtive and depends a great deal on where you live), you will still be their caregiver. You will be getting help for them and for yourself. You will be able to take care of them better as you will be able to refresh yourself. They will need you to be their advocate and just because you are you. The staff should treat you as a partner.

Please look into Medicaid and get some help through your state's aging services, found on their Web site.

Take care,
Carol

Thank you for the above information, my mother passed away in October of this year. But, caring for her and worrying about her almost did me in mentally, emotionally and physically. Now I know that I was not alone, there is nothing wrong with reaching out for help and understanding from those who have been through the experience. I do recommend psycological counseling even afterward,( i.e. grief counseling). Thanks again

My mother passed away from AD Dec 3rd. I'm an only child and my mother's last relative. She was in a home 2 blocks from our house for the last four years. I moved to part-time work as her care became more difficult, going every day to feed and care for her. We didn't go away often, even short trips were stressful, because I always worried about her. Now that she is dead, I find that I can't turn the worry off. It will take a while for my body to realize that the adrenaline doesn't have to be flowing all the time. There were days that I thought I wouldn't make it, but a supportive network of friends, and my husband carried me. I had and still have all the same mix of feelings, you all have mentioned: anger, grief, depression, but my time with her was one of the most important things I ever did. In all the pain, it made me more fully human and painfully stripped away all my layers of self-centeredness. Blessings on you all. What you give to the least of these...

My dad died with a brain tumor last September and my mom has AD, so when he was diagnosed, I took a leave from my work and moved in with them to take care of both. Fortunately, I have an understanding husband who loves them as much as I do. I'm an only child, so I was pretty much on my own. He only lived for 5 months after diagnosis, but that was the hardest time of my life. Bless his heart, I wish he had lived longer, but if he had, I couldn't have kept up the pace with them both and would have to had put them in a home. I had to make a choice about my mom after he died and I visited some nursing homes, but ultimately decided that I would try to take care of her in my home. I am blessed that she settled in nicely and has been as happy as possible. I have a sitter, which her SS check covers for 4 or 5 days a week so I didn't have to quit my job. As long as she is doing well here, I will keep her. I feel that if and when it's time for her to go to a home that I will know it in my heart. It's different for everybody. We all know what we can live with and what we can't.

You are in hell, and will stay there until you get an elder lawyer and find a nursing home that will take medicare and get them in there. And then find some way to reclaim your life.

well I feel like I am officially in hell... Im doing just great, eh? Hah! We do have good days, but today was not one of them, at this point we are totally out of money for help and I came back to assist them but find that I cant work full or really even part time so all of my money has run out, and now... I live with two crazy people who despite my knowing they are not themselves, can hurt me deep to the core with their mean comments! My sister is in New Mexico and really not able to help.

I didn't get if your parents are living in their own space, with you, or in a home, and what the fiancial resources are. All of these will majorly affect what can be done .

HOWEVER, the biggest obstacle to intelligent planning and problem solving is GUILT. Remember, if you totally sacrifice yourself, there's no way you all won't go down the tubes. Other people whose heads are working are totally necessary to help. Find as many of these as you can.

And something to keep in mind is the balance of possibilities. Think of a scale. All the small to medium things you do for them will make very little difference;BUT the small to medium things you do for you, such as taking time out, putting your needs front and center, saying "no", doing some things that feel good, etc. will pay huge dividends. Your job is to find what will keep them safe - NOT what will be the best thing for them - that's impossible, so let go of that one right now!. And settle what is best for al of you.

It's bad enough having one parent with dementia but having two is almost impossible. My mom has dementia, my dad has chf/copd and recently was diagnosed with mild dementia. So I know what it's like- BUT I am fortunate that I have my sisters and brother who tries to help at least financially. It's hard for us and especially for my sister who is almost 20 years older than I and she was widowed at a young age--life has been very unfair to her. How do we cope? We cry, we fight but most of all...we try to laugh all the time. We have hired help but it's still very stressful because we don't know how long we can afford them and have to deal with conflicts, scheduling etc. All we can do is keep trying, keep planning better strategies....

I am the caregiver of my mom. Going on two years. My brother is 1500 miles away and can't understand why mom can't play golf like the other 90 year old.
I am at the point I don't know what to do. It was my birthday & my fiance made reservation in Boston at a very nice place for dinner. I didn't want to go. I just didn't want to be that far away as mom gets so confused. We went but the train didn't run on time. We missed the reservation. I started calling home & no answer. I was scared frustrated, and mad at no one..Just mad. Its been two years and I cry all the time. Stressed to the max. Oh mom was OK. Had just gone to bed ( who knows why) she had only been up a couple of hours Forget the fact she didn't bother to eat. Oh well. Another day