Ideas to help those feeling low and helpless with depression over giving care to their spouse 24/7. by francy Dickinson
Dear Francy; My wife is in late stages of Parkinson’s. She now sleeps a lot and her speech is very impaired. I can not really understand her or what she wants from me. Her ability to be mobile is gone and I have to stay by her side when she moves. She does not eat anything but cookies and drinks only soda pop. The house is a mess, I am tired and mad most days. I know you help others with ideas, but what can you do for me…I’m just angry.
Anger, yes…who would not be angry when the person you have given your heart to for so many years…suddenly needs you the most, but you are unable to really help?
You just have to trust me this frustration and anger is called depression. If you have never had anymore than a few blue days in your life…depression may seem a fussy word for you. But you described just the situation that brings a person down.
See if this fits?
- You try so hard to care for your spouse that you actually can ‘feel’ their needs. You know when they need to go to the toilet, eat, or what they say when they mumble. You try to think ahead to things that will keep them calm. This is very what mothers do with small infants; the ability to talk, does not mean there is no way to interact with another person.
But/ if you go to the bathroom yourself, take a step out of a room or just fall asleep in your chair you miss the clue. You then feel like you have let them down. They’re in need, they have fallen, they have had an accident, they are crying from frustration…it feels like your fault.
- You find that you are sleeping at the top of your sleep…any small noise wakes you up and you feel you have to go and check your spouse. This light sleep makes you feel out of sorts all day.
Result/ you get very little sleep at all and almost no deep rejuvenating sleep. Therefore, you are just running on fumes most days and your frustration turns to anger towards yourself.
- You try to think of things to feed your spouse. As they lose their sense of taste they turn to sweet or sour foods. They eat less, so they are not hungry. They forget how to swallow well and you have to be right by them at all times to keep them from choking. They need water for flushing their pills and the toxins in their body, but they will not drink water. You try but they resist every road you go down.
Result/ you don’t eat well yourself. You do not want to make a dinner for one, it feels like to much trouble so you grab easy choices to eat. Toast, sandwich, cookies, chips and other easy to eat food. They simply give you sugar highs and lows, upset stomach, weight gain or loss and you counter with more and more caffeine to keep you going.
- You need to be there to move your spouse from point A to point B. Too unsteady to walk on their own, that means you have to jump up each time your spouse needs to move.
Result/you have no time to your own self. You get pulled away from doing the washing, making beds, cleaning the house. You can not take time to walk out the door even to retrieve something from the garage. You feel almost trapped in the room with your spouse and your world gets smaller and smaller.
- People tell you to get out and about. But preparing your spouse is so time-consuming. You have to clean them up, get them dressed, struggle with the upset they have on any change of pace to their day. Then you have to get yourself clean, dressed and ready to go.
Result/ you forget your grocery store list, you lose your keys, you are late for doctor appointments or if you do go out to eat…the process is so upsetting, you simply find staying at home is safe and easier. Plus; one trip out the door, means 2-3 days of bed rest for your spouse and more work for yourself.
- TV becomes the focus of the household. It will calm your spouse and give you that ‘white-noise’ in the background to rest your mind.
Result/ you nod off during the shows and that reduces your night-sleeping ability. You sit in a chair and do not get real exercise so when you jump up to help your spouse you find you have a sore back, or achy feet.
- When any moment of intimate talk with your spouse does take place, or even quiet time–you look at your spouse and remember old times, memories of places you have gone together, things you used to say to each other. You miss the little jokes you once shared, the songs you sang, the silly talk between you. You start to hate holidays, anniversaries, birthdays and you avoid the thoughts that bring out the pain.
Result/ you get upset and emotional, then you get mad at yourself for being silly and you get angry. You walk around the house just thinking of what you can do to change things and yet, come up with no answers.
- You wake up with an idea for your day; maybe you have a household repair that has to be done or a chore that has to be attended too. You have it in your mind, how you will go about the repair, or what tool or part you have to buy to make the repair. Then you start to care for your spouse. The morning personal cleaning of them, their breakfast, their pills, adjusting their chair or couch area, the whole process and then you realize that the day is half over. You have had no time to do the chore or to leave the house to get the tool needed.
Result/ you get upset with yourself that you are getting nothing done around the house. The place looks messy, dirty, and it is over-whelming. You start to pull back and force yourself not to look at the mess, not even think of the repair. You just protect yourself from disappointment by ignoring your surroundings.
- You have had a stomach upset for a few days, you know you do not feel right. You get so busy helping your spouse and dealing with anyone coming over to help with the house that your own health is coming second.
Result/you slowly become weaker in your own body. You start to have more problems. You feel allergies, problems with your bathroom habits, your own cleanliness. Everything seems to go downhill. You would go and get yourself checked-up with a doctor but the ability to be free to leave the house is so limited you just put it all on the back burner.
- Your family or children come over and when they do your spouse rallies up and looks so much better. They see a person that is doing well, maybe in a good mood and wonder what all the fuss is about when you call them.
Result / your relationship with the family and old friends starts to go down. You call them less, you rarely ask them to help you. You know they are busy and so you simply cope. You feel upset towards others that don’t understand
All of the above things equal a care giver that is burnt out, tired, feeling helpless, angry, upset and that all twirls together into high stress and depression. It does not mean you are a bad person, or that you are not strong, or that you are not doing your best. It means that you need help.
HELP – HOW CAN I GET SOME OF THAT?
- March your bottom into your doctor’s office and tell the doctor you need help. Let them know you are tired, upset, worried and simply have emptied out your energy pool. Let them look you over. Let them see if your weight, blood pressure, sugar levels, energy, strength and emotional issues are understood and treated. That way you can continue to care for your spouse with a renewal of energy and creative ideas to help them. You get strong, so you can be stronger for your spouse.
- Call a ‘family and close friends’ meeting. Explain you need to have some time to breath away from the house. You need help with a few hours here and there to take your mind and body out the door and away from care giving to ‘just be you’. Let them come up with ideas; maybe they will offer to come and help, maybe they will offer to pay for in-home care. No one knows what you are going through until you share. I had to share and when I did I was shocked at how kind and loving my family and friends were to me.
- Call a professional. There are companies that your doctor or friends can recommend to come into your home and help with different chores. If you are on a strict budget, do not worry…the companies that do this work, know all the ways to get paid. They will know how to bill you personally, through your insurance, through a local or state funding, or other means. Give them a call; it will cost nothing for them to come and give you an evaluation. They will tell you what you need and work within your budget. If nothing else get a bath lady to bathe your spouse so that chore can be done fast, professionally and allows you the rest while they do so.
- Ask the doctor to advise you of an elder care social service. This is really nice. They are trained people who know how to find different services in your area that are free. They will help you get things done. They can advise you and you can alway say NO…but to know that there are people out there that will help you is so important. I have personally gone to the local hospital and worked with the social worker there. Hospitals are very community oriented and they want to advise you on services. There is no cost to go and talk to an Elder social worker.
- Call your local Elder social services in your area. They will hook you into things that your state can provide for you. Often there is food, care, energy bill relief and medication money available from your state. It is a wonderful service and your tax money, all the years of your working life, have paid for these services. You are not talking anything from anyone – the state wants their residents to be safe and well cared.
- Let neighbors and your faith community know that things have now gone into over load…do not be quiet. No one can help, if you don’t tell them your efforts and challenges. The help will be for you and your spouse…so speak up. Veteran’s, service organizations like Elks, local community services, fraternal and union orders, there are so many people who are waiting to give you a hand. Reach out…talk – tell them you have needs.
- Hospice is a free service for those who are on a life ending journey. They will come to your home and make an evaluation and give you ideas of how to use their services. If it is not time yet, they will check-in with you every couple of months, if it is they will ease in the door and take over and give you so much more time to yourself. This service is so important and most people call them way to late. When you call they will come and offer food prep, cleaning services, medication, nurse services and the list goes on and on. Know that it is there…to allow you to return to the job you really have…the loving spouse. So you can have quality time during the journey’s end for your loved one.
The key to your situation is being brave enough to reach out for help. To talk, interact with others and to understand your personal strength is the key to good care for your spouse. You need to stay healthy and in a place of peace with your emotions. No one will take away the sadness of your situation, but they will honor it and help you find ways to work through the journey. I thank you for your loving care given to your wife. Blessings, francy
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