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We've talked about my husband and I moving in with Mom and Dad for years. We all four agree that it's time and I know I'm making the right decision. My husband is spending most of his time on the east coast getting our house ready to sell or rent. I'm planning to stay with Mom and Dad four weeks at a time with one or two weeks at home in between. Dad has been Mom's full-time caregiver for years but he's starting to feel overwhelmed. After three days I completely understand why. I feel so lonely and I worry that my own health isn't up to the job. I think my most important job is just keeping them company while my mom dies, but I'd like to do it without sacrificing my own mental health. How can I make some connections in a totally new community without leaving them alone for large amounts of time?

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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
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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.
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Ok..here I go again...
Call Hospice.
If your Mom is eligible for Hospice services you will get help.
You will get a CNA that will come in and help you bathe her, help get her dressed a few days a week.
You will get supplies delivered to you, no going out to buy wipes, bed pads, ointments, creams, lotions or incontinence supplies, gloves and things like that.
A nurse will be assigned, she will check vitals weekly and order medications that will be delivered to you.
You will get equipment that you will need a Hoyer, or a Sit to Stand, Hospital Bed, commode, wheel chair....
You will have a Social Worker that you can talk to.
You will have a Chaplain assigned, you can choose to talk to the Chaplain or not, you can let them visit or not.
You will have the support of a Hospice member 24/7

I can not begin to tell you how much help and support my team has been. These people that come in to help us have become like members of the family. In some cases better because they show up and help out!

And you need a local support group that you can go to and vent, get ideas, and just cry if that is what you need to do. (On line like this is great but sitting with a group of real people is better.) And since you will be moving into a new area this is a good way to meet new people.

I am glad that you are able to move to help them out but do not let it destroy your life, your marriage by focusing solely on your parents.
In many cases Assisted living will benefit both your parents as well as you and your husband since you can still be a Daughter, A wife and not so much a full time caregiver. Sure there may be guilt about placing them but to maintain sanity that might be necessary.
And your Mom will only become MORE difficult to care for then you will do the same for your Dad.....
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WerdNord of course you are feeling overwhelmed. You are the only adult in a school bus packed with second graders and the driver has just become unconscious at the wheel. You are returning from a field trip and still 50 miles from home. What on earth are you going to do now the kids are tired and restless and beginning to fight amongst them selves.
You rushed to the front of the bus and turned off the engine so no one was hurt, but the driver weighs 300 lbs and is slumped over the wheel so there is no way for you to drive even if you knew how. You call 911 and the ambulance is there in 20 minutes and you continue to do what you can for the driver but you are beginning to shake and your hands are ice cold even though the day is warm. you breath deeply to ward of one of your anxiety attacks. the driver is removed from the bus by the EMTs and eventually makes a good recovery.
"Ms WordNord we are hungry "a little chant rises from the back of the bus then another little voice joins in "I need to pee" "So do I" and suddenly they all do.
So you send the girls up the hill to go behind some trees and when they are all back up go the boys. You are getting a bit calmer but still in a panic. Now what.
One extra large boy swagers up to the front (he must have missed several grades) "Yo Ms Nord, I can drive this thing, me dad lets me drive his semi when he doesn't have a trailer" Tempting as it is you tell him "NO" "Well I kin show yer how" That sounds more tempting as the driver had told them they would be stoping to eat in ten minutes before he passed out so civilization must me close. Now the battery has gone dead on your cell so you can't call for help.
You decide to give it a try and slide behind the wheel but have to sit on the edge of the seat because your legs are shorter than the drivers. The boy sniggers. "Pull that lever and pull forward" Oh yes you see the lever and pull but nothing happens so the boy gets behind the the seat and suddenly you shoot forward. Now turn on the key, well you know where that is because you turned it off before. The big old diesel roars into life and you move your foot to the gas pedal. nothing happens except the engine roars even more. The boy mutters under his breath and luckily you don't catch it because you are certainly not what he just called you. "Foot on brake foot on clutch now ease up" he continues to instruct and finally the yellow monster jerks forward. Heart pounding in your chest you let the bus go it's own speed and it hits 5 miles per hour before you apply the brakes but relief is in sight the yellow arches are ahead.
You dare not pull off the road as there is not a chance you will maneuver the parking lot.
The kids pile out and run inside, you follow as fast as your wobbly knees will allow and order 36 hamburgers and a very strong cup of coffee.
Well you did it the kids are safely back at what goes for civilization in these parts.
You are white as a sheet and the guy behind the counter asks if you are OK. The whole story spurts out from your tearful lips.
You still don't know how you will get your charges home but at least now you can call the school. The principal is a very kind man and tells you to stay right where you are and get yourself something to eat, a relief driver if not himself will be there within the hour. You sink into a seat with a double order of fries and a second cup of coffee. The big boy swaggers past and slaps her on the back "Yer did goodMrs " he mutters.

Now the moral of this story is that there is always a way round everything and you are at the stage where the driver just slumped over the wheel.
!. Don't let yourself get in the situation, that is have enough help on hand
2. Prepare for an emergency,that is become educated.
3. When you are in too deep, find help apply for home health aides etc
4. Don't panic, always have a plan B
5. Review your mistakes, so you don't keep repeating them.
6. Develop a plan of action.

Sit down and think about what you can and can not do then divide it into things you simply are not prepared to do. Make yourself a schedule and I stress yourself not your loved one however much you feel h/she is capable. They either have become unable or have no intention so concentrate on what they continue to demonstrate they are able. For example they may be able to unload the dishwasher but not load it or put the dishes away. Don't make unessesary work for yourself by insisting they do something which they never do right. you can not teach someone with dementia. In other words pick your battles and stick to your arrangements. If you take Mom shopping on Tuesdays then that is what you do. No harm in picking up something that she really needs later in the week.
Assisted Living may or may not be the answer for your parents in your case but get your ducks in a row well ahead of time.
Make sure all the paperwork is properly in place with the help of a good eldercare lawyer.
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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?
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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.
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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.
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Caregiving 24/7 is the most overwhelming task a person can take on. It is mentally, emotionally and physically draining. No one should feel bad if they cannot do it. There are teams of people in care homes, why should we feel we can do it alone. If you are determined to help dad out set up a reasonable schedule that allows you to get out away from the situation doing things you enjoy. That way when you come back you are refreshed and ready for your shift. Hire outside help. What good is money if you are to wiped out to enjoy it. Use some to pay for help so you come out of this whole process as healthy as possible. Its not going to be easy but if you plan well you will make it.
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My heart goes out to all of you. Some things that have made my life more bearable and cut down on stress are devices. Special pharmacies that organize your scripts, put them in packets for days and time and mail them to your house. Automatic pill dispensers so you don't have to jump up and give your loved one pills 6 times a day. The best are monitoring cameras where you can talk back and forth using your phone. The camera I use now I can watch my loved one from work or from my car to make sure the aide is feeding and caring for her while I am away. I can ask her how she is doing while I am at work. It makes us both feel safe and connected. I schedule 10 hours of "Me" time a week. This time is sacred. I can do anything I want during this time when I have the aide there. Mostly I sleep. I don't allow the aide to ask me questions or disurb me during this time. You need to set some firm boundries if you want to come out of this intact. I have been doing 24 hour care now for 8 years. I was told my sister wouldn't live a year so you never know how much time your loved one has. Prepare for the long haul. I found these tools to be helpful, even sanity saving for me. I hope some of these ideas help you. Also, my Dad gave me some advice that has brought me peace. " If she dies, she dies. You know in your heart she would not have had the quality of life in an institution that she has had with you. If the day comes when you can no longer take care of her, put her in a nursing home with no guilt. In her right mind ( before the brain injury and dementia) she never would have wanted you to sacrifice yourself for her. Also, when she has a scary seizure or falls and cracks her head open I give myself a lot of positive self talk such as "I am a fierce warrior, a tigress, a grizzle bear." When I need to be strong for her and then later when I am in a better place allow myself to relax, and revisit the incident and process the fear, horror and sadness. Also, I keep a hospital bag and a death packet in my car for her. The hospital bag has her ipod, DVD player, extension cord, movies, soft blanket and grippy socks in it. There is also a phone charger, an extra blanket and a neck pillow for me. Her death packet has family photos and comforting religious objects (prayer cards etc). I hope this helps you! All my love to you!
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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?
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