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

I completely understand. My DH was diagnosed with PD 19 years ago at the age of 43. Not the path in life we expected but must deal with daily.
We have very little support and manage day to day ourselves.
Please make certain you have at least an hour a day you can call your own. If your loved one is napping, take the opportunity to rest yourself or engage in an activity you enjoy. If you can leave them alone, take the opportunity for a walk. Just getting outside can make such a difference. I take some type of getaway at least every three months. Fortunately we can get an outside agency 4 hours a day in my absence which helps with the guilt of leaving,
Be good to yourself. I feel for you.

My home is in the same condition, pile after pike of stuff, it was so beautiful, everything hand picked, and when Alzhiemers over took our life (husband) now 84, nine years ago, things started changing, I just cannot get anything done, I am able to control the Alzheimers part, staying ahead of the storm, but he demands attention constantly, I can't get 5 minutes alone. When he goes to sleep at 9, I lay there and thank the Dear Lord for a few solitary hours of peace and quiet, I am surely not going to give that time up to straighten things up. I just do not have the want nor desire to tend to it (except essential areas) anymore. But like you, if someone would just get it straightened out I could handle it, maybe

I want to thank all of you (15) for your responses. Earlier this afternoon I had a panic attack while being out for a late breakfat with DH. I felt so alone and afraid but when I got home there ll of you were! It means so much to hve you all in my life.
I am going to try to get back to church, hopefully tjis weekend, with or without DH.
Dh just turned 65 and we had to get a new 2ndry health ins. State of Ohio is getting out 9f the health ins business. Got a catastrophic coverage policy for him. He will need it. Aldo, the price is not bad, all things considered.
Our house is large, built in the 1890's. I have allowed DH to become a minor pack rat while I was ill. Now I am better but a bit overwhelmed. I don't think Ohio
provides for any kind of help to get a house straightened out. I know that once the clutter is gone and some cleaning is done I can take care of the place myself. But, it's getting things reorganized. That is the problem.
Right now I am d3aling with DH having a bad case of spilling things, mostly in the livingroom. He has pretty well ruined his side of our sofa and his part ofbthe rug below him. I will be cleaning the rug soon. I love doing this since it is so dirty I feel a good bit of power once it is clean again. How do all ofbyoundeal with this problem. Also he drools a lot now, again, any idea how to deal with this?
His hygiene could also do with some help. I insist he showers daily, though I am not around when he supposedly dhowers. He has admitted to going 4 days ithoutbone. We no longer share a bedroom. Mine is upstairs, his is on the 1st floor next to the downstairs bathroom. I have asked him to keep the bathroom clean. He can't, seemingly. It is a mess and I guess I will have to take this chore on too.
As I said, I really can keep this place up, once things are back in order. In fact this is my one big frustration. We always had a neat house until I got ill. Dh was then able to help with things. Now he really cab't but insists he can. I try to have him help around the house to keep his ego up. He now does the wash.
He drove the car, gor the last time, last Thursday. I almost had a heart attack as he drove. Never in mid lane, rather on one line or the other. I asked him to pull over and let me drive. He got a bit nasty, at least for him, and said NO! So, from noe on I will have to drive him to allmhis drs. Appointments..... more time lost ... oh, I know, I shouldn't be like this but I have no time for myself😧
I really dhouldn't be crying about my problems. In reading your replys, many of you are in worse shape then I am. All I need us to get my house in order,,literally snd figuratively. Then I will be able to handle DH better. Maybe I am using my house as something so as not to put total focus on DH and his ptoblemd. I judt fon't know.
Please know that all of you will be in my prayers. I hope that we can become friends and be there for each other. I know that already just knowing you are around helps me to feelmless lost and afraid.

Patricia317......I am so sorry for your plight. All of ours whatever they may be. I just wonder if you could move to a different area where there is more help and support available? I know that sounds drastic but drastic times call for drastic measures. I'm surprised you therapist hasn't helped you more with finding you some type of help. I know you are there to see her/him for yourself but your situation is a whole package. I think a lot of us are depressed because we are so dang tired. Care giving is not for wimps. So much more goes into than just going to see someone in a home for 30 minutes. You need more help than you are getting and that will only get worse as he gets worse. If he hasn't already shown signs of Lewy body dementia, I hope he doesn't, that's why I am thinking you might need to think about moving closer to different facilities and or doctors. That's really all I have. I pray for all of us every day. Good Luck and God Bless

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 .

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).

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.

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.

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

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.

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!

My heart goes out to you all. Parkinsons is rough on a caregiver. Sometimes a caregiver spouse is getting up 5-10 times a night to roll their partner over or otherwise provide help in the bed area- who can do that seven nights a week forever?

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 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.

I am in same situation with my husband. He has begun falling frequently. I'm way overwhelmed.
Is there county help? Church help? Even an hour will be good. I am lucky to have an aide in 4 hours a day 5 days a week to get him up and bathed, dressed, fed breakfast but I'm still stressed. Good luck to you!

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.

Seek help through Medicaid or any other agency you can find near or far. It is hard when you are alone, I have been there too. After 8 years however I began having severe panic and anxiety and HAD TO HIRE A CAREGIVER AND I HAD TO MOVE OUT! I had not realized how tired and beaten down I was because I too provided care to others previously. Speak to your therapist and ask for help in finding any organization that could offer assistance....everyone needs a break.

I am so sorry for you for the situation you are in. I am in something similar, no family where I am and friends who have evaporated. It gets very lonely. You are doing an excellent thing for yourself by seeing the psychologist. We all need an anchor. However you can get one is fine. You didn't mention hiring another caregiver. Perhaps you are in the situation of many people who don't have enough money for outside help, but too much money to qualify for Medicaid. Just know you are not alone in the way you feel.