I am a caregiver for my DH, he has Parkinson's. I am the only caregiver 24/7/365. Any advice?

I am with you all...Hugs and lots of sympathy goes to you all. No advice I am also beat down,depressed,tired mentally and physically. So Hugs and sympathy is all I have , but I mean it with all my heart.

I too am in a primarily sole caregiver position/situation. Most of my life I have cared for others and have never really had any time to care for myself, now 45. My mother is dying at with with hospice. My dad will be 78 and does everything he can for her which is wearing hime down with his health problems and age. I do everything else, inbetween working a fulltime job and have my youngest son with pregnant girlfriend and two young children living with me. Oh and I have 2 dogs one of which is elderly herself. My parents do not like to accept help from people they dont know so that leaves me. My brothers live out of state so no help there. They do not drive so any appts. (which are many) I take them. Grocery store I take dad or go for them. Pretty much anything a person needs to live life I am the one dealing with it. I am not complaining I love my parents dearly, just as I am sure you do your husband, but it does wear you down physically and mentally as you stated. My parents are extremely greatful and tell me daily they are. Also, I too have physical issues/limitations and some anxiety and depression. I actually dont have an outlet. When I speak to my brother he starts out good then turns it to himself and his girlfriends issues so I gave up. The other postings are correct though we must have an outlet and support. You are not alone. It is a struggle, but you are a wonderful person to love and care enough to take care of him. You/we also must take care of ourselves. Take care of yourself, even if its a bubble bath for an hour a day.

Have you tried Hospice?

I am in the same boat as you. My wife has ALZ and I am the sole caregiver. Recently, I found Hospice is not just for an end of life situation. They also provide help for inhome care of the patient (paid for by medicare).

We now have an aide coming three days a week for my wife's bathing and general hygiene. A nurse comes twice a week to check her physically. Hospice also provides necessary supplies and equipment needed by the patient.

I, too, understand. My 74 year old mom has had Parkinson's for about 14 years. I have been her caretaker 24/7/365 for the last two years. Like a lot of the rest of you, I also have medical issues and little to no help. I am now experiencing loss of mental capacity in my mom...which is hard. My brothers live in Colorado and are looking after my dad. My sister and I love and Texas. She helps when she can but also has her own family to look after. My nieces help occ too. Mom tends to wander the house especially at night in the dark (which is very bad due to her balance issues). I have had to lock the door at night now to keep her from wandering outside. (We live in a cottage on my sister's 75 acre property.) We have recently been dealing with anxiety issues which make any changes hard-especially when we travel. I even had her bite me. Not sure if we'll be able to continue with the current living situation. And I'm not sure what to do as she has very little money coming in. Hope this all makes sense. Praying for us all!

Good advice in the foregoing comments. Let me add a thought or two. My wife passed away recently. She had been disabled by Parkinson's for five years when she died. During that time I was the primary caregiver 153 hours per week--I had a paid caregiver for 15 hours a week. My caregiving included up to 20 trips to the bathroom per day, plus meal planning and everything else. Two things helped me:

1. Though the paid caregiver only worked three five-hour shifts per week, she saved my life, so to speak. You, too, must have a volunteer or paid caregiver. At first we think we can do it all, but we can't. And no, you are not the exception! You must do whatever is necessary to have some breaks from caregiving.

2. Faith: I have no doubt that God gave me strength and wisdom that I did not have on my own. As the song says, "You raise me up to more than I can be." That goes for caregiving I am sure. But the same God who gives you grace and strength also gave you a brain and He expects you to realize you have limits.

Continue with your counselor, go to church when you can, and find a volunteer or paid caregiver. If you can afford a counselor, you can afford a paid caregiver. Do not give up. God knows you and the load you are carrying.

Yes hospice is helpful with the nurse and the offering of other services. For my situation again my parents are so set in their ways and particular about people they dont know. They do however love my momd hospice nurse and the Aide that tries to help mom with showers, when she is up to taking one. So that is good. In our state as I am sure in others there is something called an Elderly Waiver that has additional services if approved after an assessment. They both have an appt. for Tuesday for the assessment that I have scheduled. If all goes well both will be approved and be eligable for additional resources and services, (if they accept them). Such as meal deliver, light house keeping, rides to appointments etc. Lastly, for whatever this is worth to everyone, I do what I do for my parents despite the wearing down because I know one day they will no longer be here with me. This is our time together, whether it be going to an appt. to the store or just sitting and talking with my mom while taking her shoes and socks off. Being able to read postings and know that others are doing similar roles in their lives has been helpful to me and i hope my sharing has helped others. If this site is all we have at this point well then this is our outlet. Take care

I also suggest doing an online search for elderly resources in your COUNTY. Most places have a County council on aging, though it may be called something a little different. But they also have many resources that are either free or sliding scale or donation, that will help with many things....from lawn mowing, to minor maintenance, to just coming to visit for an hour to delivering fresh fruits and veggies weekly....and even more. Also, there may be available a senior 'day care' situation, where your hubby could go for a few hours a day, either every day or certain days, for social outing/activities with others in his situation. I know they have such for elderly with alzheimer's/dementia and just basically old and alone. They have group activity, exercise time, help with bathroom, fed a group lunch and in our area, they are picked up and brought back home via a special van ride. I believe that many are either half day or 6 hours/day. I would also wonder if you could find a geriatric social worker or elder case worker to consult with? Not for a regular charge, but to help you find resources that are right for you, and just to create a plan. There would be a charge, but such a person might save you a lot of time and stress and get a plan formulated for you in a quick way...and would then be another resource to consult with later on.

Patricia, you have to find that something inside you to keep going. There are many on here who have given up jobs, and social occasions to be there for their family member, lover or parents. To be honest, when I was caring for my partner, I was too tired for anything additional in my life. I finally broke down and hired SOME help. But, money was a major factor. I wish you so much luck but mostly faith in yourself. Hang in there. I would do it all over again to have him back for even a day.

Two suggestions- most states have ADRCs (Aging and Disability Resource Centers) that should be the first place to reach out for help as they are aware of local resources to help people. They have a different name in some states but most call themselves ADRCs. Also there are over 500 government agencies across the nation that focus on keeping people at home as long as possible. They are called Centers for Independent Living and you can find the one closest to you by going to ILRU organizational website - they may even help with funding for home modifications and assistive devices. There is no reason to "go it alone" until you are injured/burned out. I would suggest reaching out for whatever help may be available (and the government knows it is cheaper for them if a person can stay at home longer).

I too am with all of you.I am retired nurse going on third yr of caring for mom with alzheimers . I have no family at all and I am 63 with my own health problems.mom has no assets and limited doc sec no medicaid. The nursing homes in ga are horrible. I am still able to get her into daycare 5 hrs day weekdays . All I can say is try to tske it one day at a time. I found myself worrying about nest stage, when she passes,etc, but had to let go some. I started on antidepressants and they have helped some of the ruminating. All I hope is I can keep her at home. If she has to go in nursing home, I will probably stay with her as much as poss, due to their short of help. I feel your pain. All we can do is our best .