by francy Dickinson www.seniorcarewithspirit.com
Dear Francy- I’m embarrassed to say this – I care for my husband that has Alzheimer’s and I’m feeling like I am losing it. We have no money for a fancy care center for him and yet we own too much to get assistance. Can you help?
I am right there with you. My husband has Alzheimer’s too and I often feel like I have lost my own mind. I have to work at home, I write and do my senior care consulting as much as I can so I can pay bills and the house payment. I have a large home that needs repairs before it is sold and a very limited income and it all just seems overwhelming on a daily basis. But all of this chaos is not his fault and I still see him as the man I love and married over 30 years ago.
So the only person to keeping the dishes spinning in the air…. is YOU and ME.
Lets talk about you and me for a change and not our husbands.
* I start my days with a personal building energy time (prayer if you like, or meditation) It keeps me feeling safe. I do it as soon as I feel awake and before I move for the day. Just me and my own personal thinking time before I rise from bed.
* I run through my own day and what I have to achieve. Then I think of a few things to keep my husband busy while I finish my own goals. If I need to go out or do something in depth, I may have to have a family or friend come over – but usually I stay home. There are day care centers for him, but they’re pricey and I try not to use them too often. I get all of that in my mind and then I keep it to myself. You do not want to start the day with negative things and putting to much information in your spouse’s mind What daily plans that used to calm him, now overwhelms him. So I am the master of the day.
* I get up and make sure breakfast is made for us “both”. I make no exceptions to this. I eat, he eats and takes his meds. My husband has a special emotional pill and brain pill that need to get into him with food. He has to take them about an hour before they work. So, for the first hour I keep him calm. I often feed him breakfast in bed and then his pills. I then get dressed and then it’s time for him to get up and start his day.
* I am now quite protective of my time. If someone wants to come and visit – I set the time to visit, not them. Where once I was perky and friendly – I am now very careful with my time. What will tire me or upset him, is it worth the visit or the outing? I get to decide, my family gets to live with it. And they do, they support me and understand. But I had to lay the rules down, I had to be the bad guy at first, not a fun thing to do.
*Old traditions are now changed. We used to travel, go out to dinner, go to charity events and hit the movies or plays. Now, we stay home and watch PBS specials and he watches the military channel! I used to receive flowers and special gifts for holidays and some times just because he cared. Now there are no gifts of remembrance from him. I now give him special things and buy my own flowers. But I do buy flowers and I did buy my Christmas gift online and when it arrived I kept it in the delivery box and put wrapping paper on it and put it under the tree. As he asked if he could buy me a gift, I would point to the box and say…”You did!”
* When I feel really stressed I stand up and walk away from the situation to another room. I take three very deep breaths and then I try to think of my Kodak Moment. That is a little thing I have been doing for a long time to take note of life’s little gifts. As I go through my days, I see something sweet around me and I take a picture of it in my mind. Like waking up with my sweet husband by my side and our two dogs hugging in close to him and our cat at the end of the bed. All of us together in a place of safety and sleep. Or, when I am driving and I see some squirrels run across the road or cute little children climbing off a school bus, I hit the snap button in my brain’s own little camera. So, when I am need to do a mini-mini escape from frustration and stress – I can pull up some of my brain pictures and think about them and be grateful.
* I make a plan to escape once a month. If there is a special museum show or a free summer concert in the park. I make that our “get out day” I take a small picnic a couple of chairs and my husband and I drive to the event and have a really nice time. Short, simple, something for each of us.
* Now, this is the hard part. I made a decision that my husband did not need any further medical treatment for the usual check-ups that we all have done. If he has cancer or a cold that turns into phneumonia it will be how he passes. Because dementia does take your mind first, but it may take a long, long time to take the body. I do not want him floating in a state of confusion for years. So, I am turning it over to a higher power to decide what his passing will be. But I am not going out of my way to keep him in perfect health as I have been for the last 30 years. This was the hardest thing I have had to do so far, just making this decision and now sticking with it tore me apart.
* You may find me poking fun at my husband for his non-functioning brain, or singing a song that comes to my mind, or watching only happy movies, or talking to friends that have fewer problems in their lives, or reading a Daily Word, or writing a daily journal, or just being goofy. Because I can not stop being me – a blonde is simply a blonde and there is nothing I can do to stop that. Ditzy and strange, but I can still give him love and care better when I allow the me inside to still be there.
* If there is food that I am craving, or a book that I want to read – I carve out time for me too. More and more he is just watching TV, so I am able to do my work during the day…at night I curl up to him and put my headphones on and listen to music and read a book while he is watching his favorite show. It comforts me to be close to him.
*If there is an argument I pull back and stop. There is nothing to argue over now, I am making the decisions right or wrong. All the years of sharing and compromise are gone, now it is me that has to decide and hope that my actions will bring us both to a better place in all things.
*If I become frightened of my decisions or of the ever changing moods of my husband – I deal with it with tears. I do not allow myself to think ” be brave no tears” – No way, I am brave, but I do have tears and loneliness and that is OK. After a good cry on my own, I work through it and come out ready to tackle another challenge.
* I do make plans for “after my husband” – I do not think this is being cruel to him, I think of it as being kind to myself. I will say to myself; “when things are over I will make a trip to the ocean with my sister and just rest and enjoy the dogs on the beach.” It gives me a feeling that “the end”, will not be “my end”. I need to feel that to keep my spirit strong.
* I try to care for myself as much as I can. Everyone tells you to take it easy. When you deal with any heavy care giving you can not “take it easy” but you can eat and drink water, and get check ups and take your meds on time. You can walk in place or do Yoga – you can have a journal and express yourself – you can eat chocolate and laugh.
* I hope that some day…no one will understand our frustrations. I hope this horrid thing of dementia, cancer, brain disorders, diabetes and such are long gone. I hope that a wife can enjoy her husband until the last breath instead of spending years giving him intensive, 24/7 care. But, for now…you and I both know it is only us. WE are the ones that will take them through to the end, we are the ones that can do it. We have been strong our whole lives and now we just have to be strong again, but for two. I spend my day telling my husband, ” I love you”. I guess I just don’t want him to forget that too. But it comforts me, every time I say it – I feel safe for a minute. Feeling safe is what we have to hold on to, even for a moment.
* You can do this, spouses do this all the time. We are all tucked away in homes here and there around the world, but we are all going through the same feelings. Click into a support group, click on my webpage and my online radio show and keep your spirits as strong as you can. You are gifting your spouse with more love than you ever thought you had. You are not leaving him alone, you are standing by his side and you are doing it with your head held high and a smile. Because pioneer men and women have it in them.
Visit me at www.seniorcarewithspirit.comand get more tips and ideas of how to be creative in your care giving. Blessings on you…francy