I have been a full-time caregiver for my parents for less than a week and I already feel overwhelmed.

I too am 53 and Mom is on her death bed. She has end stage COPD and we've been through the rounds of pneumonia and hospital, rehab, home one day, pneumonia and hospital, rehab, and back to the hospital. She finally elected hospice. The transition to hospice at home was a complete nightmare every step of the way. The people were all wonderful (with the exception of one nurse who had issues and had to be removed) but logistically it was horrible...deliveries were late, Rx's slow to come, catheter installed wrong and painful, the bed horribly uncomfortable. We couldn't find a dosing routine that kept her comfortable, and now she's so drugged she can't speak and can barely move. On the fourth day of pulling round the clock nursing shifts, I had a breakdown. My husband has a new job, so didn't want to ask him to take off, but at the beginning of day 5, I came unglued...exhaustion took over completely and I begged him to stay home and watch her so I could get some sleep. There really needs to be a boot camp for home hospice caregivers so they can know what to expect. They hand you a ton of informational booklets and cards for nurses and social workers, but they offer suggestions, but they don't address the long hours of feeling helpless and inconsolable, not being able to understand whether your loved one is in pain, or needs water, watching them choke on their ativan and morphine, and trying to climb out of the bed whenever they're awake. They finally took my mom to hospice house until they could get her stabilized on Methadone. I've been sitting with her about 3 hours a day. I know she knows I'm there, and I wish I had the fortitude to stay with her, but I have a special needs son in his early 20's and a house full of dirty dishes and laundry. We had to switch my son's and mom's bedrooms to accommodate her needs...yet if I had known she would no longer be able to stand walk, I would have left her in her own room. She responds better to the nurses than she does me, and I feel like everything I'm doing, I do wrong. I know she wants to be home, but it's more than I can bear, so if it looks like she's not imminently passing, I am going to have to put her in a residential hospice. I feel so horrible that I can't honor her wish to die here at home. I. just. can't.

My mother had dementia and my father needed help caring for her. They tried assisted living, but my mom was always the sociable one, yet her memory was so bad and her actions so inappropriate at times she wasn't able to appropriately attend activities. My father was very depressed there. They had sold their home after 40 years to move into this wonderful facility, yet my dads depression got really bad and he wanted to move out. I was about 33 years old back then, had my one year old daughter at home. The lot next to our house was for sale. I'm a nurse. Seemed like the perfect idea for my mom and dad to buy the lot, build a house, and have them live next door to my husband, my daughter and myself. When my daughter got out of diapers, my mom needed diapers. I also needed to work full time for benefits and house payments. I got up at 5am every day, toileted my mom, fed her, showered her and went to work at 7am. She died in 2003. My dad just wanted to die after she was gone. Now he is 91 years old and needs more assistance after some health issues. I am over there every day. I cry every day, knowing this may be the day I find him dead. Every day this goes on. I am totally CONSUMED mentally and physically. This has taken a significant toll on my mental and physical health. I am now 53. My daughter is 20 years old. I cannot enjoy the "empty nest" phase of my life. My husband and I would Love to sell our house and downsize. We cannot. I know I enable my Dad, but he does not want strangers in the house, he has no friends still alive. He wants to die. I have been pre-grieving for about 20 years. Like I said, I am a nurse, have been for 28 years. I admire those who step up to the plate and help their parents during the inevitable aging deterioration. But this has significantly changed my life. My mom started having memory problems at around 65. I figure if I follow her path I may have 12 more years until I get dementia. I have set up my will that I am DNR at 53. This did not turn out the way I expected. This has taken up a third of my life. I have walked into my dads homes several times and found him on the floor and thought he was dead. At this point, although not likely, I sometimes think he will outlive me. Although I am not suicidal, I sometimes think my death is the only way to get out of this pre-grieving, totally mentally and physically draining situation. I don't sleep well, when I do, I dream of tasks I need to do to help my dad. This has deeply affected me both consciously and subconsciously. There is no way out. I do not even think I should go away overnight, yet alone a vacation, because my husband and I are it. I don't think people should live this long. Medical technology extends the average life span by years. If the quality of life is good and elderly enjoy activities and other people that's great....keep taking the blood pressure and cholesterol lowering medications. But for the elderly that just deteriorate....no one after 80-90 that is bent over and can hardly walk takes up golfing or rock climbing. In hindsight, I wish my parents had stayed at the assisted living place. As I said, in 2003 my mom died. I think if they had stayed there after my mom passed, my dad would have made friends and have social contacts. I love my parents very much. I guess this is my purpose in life. I believe in GOD and believe we borrow a body yet own a soul. Please consider all your options before you sell your house and move.

Are you their only child? Do you have POA and health care control? Do not walk into this tough job without consulting an elder care attorney. Expect little appreciation from uninvolved relatives.

WerdNord, you've made a huge decision with the best intentions, but now is the time to set up help.

Go to www.aging.gov and find your state's resources. Look for The National Family Caregiver Support Program (it may have a slightly different name) and see what support they have to offer. Your local Area Agency on Aging should also be on the list. Keep checking into your community resources to see what you can do so you don't become bogged down in something that you can't handle.

We'd love to hear back from you as you settle in, and remember that your health is a priority for everyone's good.
Carol

Assisted living/ independent living facility for the parents. You can visit daily or as often as you want. You are entitled to live and enjoy your life while YOU are healthy enough to do so. Parents will have a better social environment and support system in a facility designed for them.

If you are overwhelmed now this may not be the solution to their problem. Dementia care is overwhelming and it is a progressive disease she will need more care as time goes on. Look into other options, before your house sells! Assisted living would be an excellent option, yes it is expensive. Depended on what stage of the disease she is in, they may be able to share an apartment for awhile yet. Or she may require memory care. Sometimes that means a separate living for them both, and becomes quite expensive.

Find a caregiver support group. The Alzheimer's Association has a complete list of links to state offices where you will find a list of meetings in your area. Look into adult daycare in the area to give you and him both a break. Call you Area Agency on Aging for information on resources available. Seek counseling, these are huge changes, very stressful ones, and hubby should also attend when he gets there.

What if the house does not sell? What are your options then?

WerdNord I found being a full time Caregiver to my Late Mother the loneliest task in the World, but also the most rewarding, as when Mam passed away earlier this year I felt a great peace within My Soul. Try as best You can to make Life as pleasurable and happy for Your Mom & Dad, by always wearing a smile, sing songs and recite poetry together. Look upon this journey with Your Parents as Your Last and make beautiful memories. Believe Me the time You will spend with Your Mom & Dad will pass much too quickly.

Since your father is still in his right mind, you can help each other. Why not still work, and he can watch her while you work. Then you go home and help your father deal. You can also work part time. Another option is that your parents can move in with you all; he can sell his house. Now if you have to watch your mom--by yourself and had no support--you will have to quit your job.

The first few weeks and months are always a steep learning curve, you will soon settle into a routine where the previously unthinkable becomes the new normal. Since your dad has been coping alone up until now there is no reason for you to feel tied there 24/7, schedule mental health days at least once a week where you can get away completely, and set aside time for yourself every day as well where you can do things you enjoy or that just need to get done. Encourage your dad to do the same. And don't be afraid to call in reinforcements, either paid or volunteer or extended family. Is your mom ready to call in hospice?