How can I get someone to take care of my husband and have peace about leaving him?
I have been caregiving my stroke disabled husband for 5 yrs. without a break. Now he is diagnosed with Parkinson's due to the severity of the initial stroke. The longer I care for him, the more difficult it is to feel comfortable leaving him. Now I have this dilema. He is unable to clean himself thoroughly after a BM (I guess because he can not stay on task). He does not "feel" that he is not clean, which I can't understand. Therefore, I must check him at bedtime in order to prevent bedsores. I need to visit our son who is having surgery and I don't know what to do about getting help to replace me while I am gone. If I put him in a respite facility temporarily, I am afraid they will not take care of him. And I can't hire someone just to come by a "clean him" before bedtime. The preparations just to leave is so overwhelming that is why I have not made an effort in the past 5 yrs. How can I get someone to take care of my husband and have peace about leaving him.
You are a saint to have spent so many years providing care. And you are overwhelmed by the task you have set yourself. It is more than time for a break, and a visit to your son who is having surgery is not nearly sufficient. You need a BREAK - time away from caregiving.
All caregivers, especially those who provide 24/7 care to one who is physically disabled, need time away from the job. You can use this opportunity to establish a way for your to have ROUTINE breaks, so that you will avoid burnout.
Yes, you can hire someone to come over at bedtime. Instead of saying for 'clean up', you can request bedtime preparation. Most companion agencies have a minimum time, usually 3-4 hours, for a visit. Ask them to help your husband with his bath, shaving, and dinner. Request that the same care provider come each night that you are away, so your husband has some continuity.
Once a month after your return, hire the same agency and caregiver to come by for several nights. Or, ask them to come once weekly. The quality of care you provide for your husband will improve if you can count on small breaks, time away from him. On the nights the agency is there, plan to be away from the home. Go to a book club or a movie or exercise or a long walk - whatever, so long as you are OUT.
If you are troubled by being away, consider that this is something you are doing for him, to improve the quality of care he gets. As his diagnoses now include Parkinson's Disease, this may become preparation for time in a nursing facility as his disease progresses. It cripples him to always have care from only you - You may not be there all the time, everyday, for the remainder of his life.
You must take care of yourself in order to take care of him.
Oh,Hon! I know personally how hard it is to let someone else take over what we perceive as being our duty or our responsibility. My dad was bound and determined to take care of Mom but it finally got to the point that he had to admit he couldn't continue. One of the hardest things I think I have ever watched was him admitting he couldn't do it anymore. Now that we have professional help with her, he is much more relaxed. He sleeps all night again and is so much more rested than before and I think Mom is doing so much better, too. He still worries about her (I think that will always be true for him) but he knows she is getting professional help. It may not be the most loving care like he gave her but sometimes that can be detrimental to both the AD pt and the caregiver. You know the expression, "Love them to death"? Well, that was my dad. He was loving her to death - his! Remember that caregivers who do not care for themselves are more likely to die before the patient - then who's going to care for them? Taking time away from the situation is a good, sound, medically necessary prescription. Your son needs you, too, during his surgery. So, get an agency to come in, make sure he eats a good supper and cleans him up for bed and go take care of your son. I will keep you in my prayers.
I would be interested in whether the answers included "Practical" help. Just suggesting help is one thing, but telling others where to go is quite another thing.
Kay has the right answer. You will probably follow it because you are motivated by your need to see your son. But you should keep up what ever routine of outside help that is comfortable to you when you return from your son's house. That way you will feel free to visit your son, or anyone else, when ever you want. Even if you choose never to visit anyone again, the fact that you can, makes you free; and that makes a difference.
Communication is important and I think you are on the right path. Who ever comes to help, tell them what you are most concerned about. Perhaps something like what you wrote, or something like, "I am most concerned about keeping my husbands bottom clean after he uses the bathroom. I am concerned about skin breakdown and bed sores. Please make sure he is thoroughly clean when..."
When my mother had her stroke 8 years ago, she had frontal lope damage. Among other things, she lost her sense of judgement. She kept lifting up her hospital gown and "scratching" her bottom. The nurse's aides didn't clean her as well as I would have thought, so her hand were constantly dirty. Literally; and I knew what the dirt was under her nails.
I was embarrassed to tell the nurses what my mom was doing and I was intimadated by the nurses because I didn't want them to think I was critizing their work, the whole subject was embarrassing. It was very frustrating and upsetting for me. I was wiping everything she touched and constantly cleaning her hands. I felt I had to be there all the time, if only to keep the hand rail clean so doctors and nurses wouldn't contaminate themselves and go on to other patients. Eventually I had to say something because I was going crazy.
Things got much better once everyone was aware. Even though some workers do a better job than others, good communication was the key. When I look back now that I am no longer handicapped by poor communication, it is hard to understand how I let it make things more difficult than it had to be.
We brought my mom home to live with us (my husband and my two year old son at the time). It was tough for a long time. I felt I was the only one who could care for her because of her bathroom issues. I was lucky though, she continued to improve, and although she will never be able to live alone again, she did eventually get her sense of judgement back, and is still making improvements to this day.
Test someone out before you go. Be sure to communicate exactly what you need done, specifically. You will find someone who will demonstrate that they want to make sure you feel confident leaving your husband in their care. It's your decision who you choose for help.
There are several sites that Caring.com have listed on here. HomeInstead Senior Care is just one of them. You have to look them up and call or go online to see if they offer what you need. Sometimes respite care is the best answer. This is where you place them in a facility that takes part time residents. By that, I mean that they are not there permanently, just for a few days to a few weeks. This would also give you a chance to check them out to see how well they would do with him and how well he would do in their home. It would also prepare you both for that time he will have to be in a facility permanently if that time comes.
Just as you I have been caring for my father in law for the past 3yrs. due to a front lobal bleed. I am in Ontario so we do have Homecare and Respite care. I am a Healthcare Provider as well. You have to think of yourself, and being away is important for your own stability. You do need that "me" time. Hire a person from an agency. She/He will come and visit prior to your leaving so that you can get acquainted. You can let them know how you do things and how your husband likes things done. They are qualified and do have their Certificates.As for his peri-care (b/m's etc.) they know how to care for your husband. As well they can prepare meals, assist in dressing/undressing your husband. Call an agency that perhaps you may have heard of. Even if he was unable to get out of bed they are qualified to change linen while he is in the bed and wash him. I can understand your worry since you have been his primary care giver. I honestly believe that once you have gotten away the first time you will enjoy that time off when you arrive home. I am sure that your husband realizes' all that you do for him, I think he would be happy to see you able to just get away after you get home. I applaud you for what you are doing for him but I cant' stress how much you need some time to yourself. As a Healthcare Provider, I went through this with my own parents and now my husbands' father. Its' hard when you are inhome 24/7. Pls. dont' feel bad or have negative feelings about leaving him. Believe me he will be in good hands and make sure that you re-iterate that you dont' want different Providers' in your home, this would only confuse your husband. I am sure that an Agency will give all that they can. Thats' what they are there for. I wish you all the best and as another person who replied, carry on with this after your arrival home. Like I said you need "me" time, and you wouldn't believe the appreciation of returning home after your 1 or 2hrs. away. It rejuvenates' you in a way thats hard to explain. I myself have Homecare for my father in law twice a week and being able to get out and do what I need done, even visiting a friend, makes you appreciate your husband and yourself even more. Take care and do the best for you. They will not leave your husband unattended, he will be well taken care of, I promise you.
Just as you, I cared for my husband 24/7 for 5 years because of 2 debilitating neurological diseases. I never left the house, ordered everything online and my kids all brought things, and visited a lot which helped. They all work and have small children, I wouldnt ask them to do what I conceived was "my job". It is different when the person you are caring for is your spouse. You are not just caring for him or her, but you are also watching the person (of 30 years) in my case, disappear a little each day. My husband was my true best friend, soulmate, all the silly things you call them, but we truly had a fabulous marriage, he was a great husband and was the traditional man who took care of all the money and earned it, and did very well, leaving me to be a wife and mother--very happily. Not only did I bathe him and feed him but I had to take over all the household responsibilities along with our own little rental property business and frankly, I got so burned out. My wonderful husband had a horrible stroke last may that litterally collapsed his right ventricle. He was hospitalized, then in a nursing home for 40 days and doctors and family convinced me he needed specialized care I could not give him.
Yes, here's the guilt trip, I found a pretty good small dementia care unit--about 7-8 patients with an excellent patient to caregivers ratio and he was admitted. He is still there, and frankly mentally he has deteriorated so much I couldn't possibly handle him alone anymore and in- home care is much more expensive then a unit.
We are among the lucky, we have Long term Care which should last @7 years, after that, if he survives it, I will be on my own paying for his care. He is 79 years old and in excellent physical health, but mentally, is in terrible shape. He is always lost, confused, living in another decade in terms of his little conversation. He has terrible periods of agitation which drugs help a lot but have to be upped all the time and those drugs are very dangerous, but without them, no one could care for him.
Yes it is an awful situation, and every day I feel guilty he is not at home, but in my mind I know I have done all I could over the last decade. The reason it is different if our loved one is a spouse, is the loneliness of missing that single most important in your life. I miss being able to converse with him, he was a brilliant corporate CEO and could handle anything. I loved talking with him, every day of our lives. That is gone. We had to give up sleeping together 4 years ago when he started having horrible sleep patterns where he went from Screaming in his sleep, to hitting me in his sleep and he never even knew it happened. He felt terrible the next day but it got worse and happened so much more often. Yes, caring for a spouse is horrible as it is the complete realization your Marriage as you knew it for such a long time is OVER.I now live alone, and visit him every day--it is so lonely. Now it is the very long dragged out painful goodby. Not of his physical being, but of his mind, the most important part of him.
My dear, get some help, I didnt until there was no other choice, but I exhausted myself and aged 10 years in a 5 year period. Yes you will feel guilt as I do, but you may live to see your grandchildren marry or have lots of great grandchildren. If you don't it will cost you years off your own life. Take the plunge, interview people, go with your gut and hire someone. If it doesn't work out, hire another and another and tell them your expectations. When the time comes, you may have to take the next step as I did, and it truly is much more difficult than just hiring someone for a few hours, which you can monitor pretty well. I have found Professional Caregivers are a hit and miss bunch.Some are wonderful and well trained, others well, you know what I mean. Stay on top of them and let them know your expectation. Good luck and remember you are not alone, God never promised a rose garden and the vows do say in sickness and in health. Give it what you have and know you did all you could.
I know your biggest concern was care in the evening, but have you considered medical adult day care? In many cases it is less expensive than home care, assisted living facilities and nursing homes. The nice part is that it gives you up to 8 hours a day to run errands, work or visit with friends. Adult day cares like Active Day http://www.activeday.com are a safe and secure homelike environment. Your husband would receive health care supervision including personal hygiene, therapeutic programming, nutritious meals and snacks and socialization. Being away from you for a few hours during the day, may make things easier for you to handle at night. Even if you decide to bring in home care at night, you should consider adult day care in the afternoons. Caregivers deserve a break and he'll have a better quality of life as well.
There are also notes that are helpful at http://www.covenantinhomecare.com/literature/
Hope this helps a little
Ashley A, Q.D.C.P. Covenant In-Home Care, LLC.
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