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You will get LONELY.
You will feel anxiety.
You WILL get angry and yell at your loved one. LOUDLY. You know your are yelling at an illness but it happens. I think it HAS to happen from time to time to remain sane.
You will cry. In the shower, in your room, you will be numb and go through all the motions of caring and then seeing a movie or video or just something that they do will have you in tears.
(Example-other day I told my DH to MOVE FASTER and then GET OUT OF MY WAY I CAN DO ALL THIS (that i needed 5 hands for) MYSELF JUST GET OUT OF MY WAY. And he said very honestly...I am doing as best I can. And that was the truth. He was trying in his way. Had a good cry later about that one.
Some days more often than not you will just want to pack your stuff and leave and get on with YOUR life.
You will spend half your time on the phone yelling at doctors or doing it to their face.
You will find that most hired home health people are dumb as a box of rocks and mostly want to either steal from your home or sit on a chair and have a text party with their friends and social media.
You will want a week ALONE and ALL TO YOURSELF. Then you will want a year. YOU WILL WANT NORMAL AGAIN.
Your sleep will be crazy-(this is why I am posting at 5 am and getting ready to go to BED) UGH
Social Services/Medicaid all that is for the BIRDS, they talk a good game but are useless.
And depending on their condition, if you did have freinds, you will find out that they weren't really friends and they are long gone.
Then you will do what I am doing now and start looking for a roomy!
YES- there are many of us tucked away, doing our best, lonely and slowly feeling like we are going mad! :)
We all expect that someday our parents may need extra care, but no necessarily your wife/husband. In some ways you are much closer to your wife. In my case, she taught me things about life that I never would have experienced without her. We traveled, we laughed, danced, she helped raise our two kids that she wasn't the biological mother, we love dogs, and we moved to Florida to enjoy life.
All of a sudden, a year ago, she often didn't recognize me. She would go over to the neighbors and ask to get this man out of her house. This would happen almost daily. I did everything at home, cooked, cleaned, did laundry, outside work, etc. It was a full time job caring for her. I couldn't leave her, even to go into the grocery store for five minutes. She would be outside roaming the parking lot. So, when I needed to run errands, twice a week, I would have a service come to be with her. They were very nice, and very helpful for my well being.
It became more difficult to care for her, as she didn't always recognize me. It became impossible for me to give her a shower.
We moved up to Atlanta to be nearer my daughter. After 4 months of being here, she started going to the neighbors again asking to have that guy removed. One of the neighbors even called the police, thinking that there was some sort of domestic issue going on. She also started hitting me. That's when I knew what I had to do.
Well, after 9 months of taking care of her, I finally had to place her into a Memory Care Facility. It was the worst day of my life.
I go in to visit her every day. It was really hard at first, I would leave in tears. But, after five months, I know she is well taken care of, and she is in a good place. I don't know how often she recognizes me, but she often tells me she loves me.
Take care of each other, you never know when it is going to be the end of your world together.
Also, you can learn from this website and from other caregivers many tips about how to care better. As you will already have learned, Alzheimer's is progressive; and you need to learn how to deal with its progression. There are many technical aids that can be brought into the home--hospital beds, ceiling hoists, toilet aids--as well as advice from social workers, physiotherapists, doctors and nurses. Don't try to do everything yourself. Prayers and encouragement.
I visit the AL, memory care, just about every day. It is painful when I go and hurts when I leave, She wants to come with me. I wash her clothes and bed sheets. Good point, that staff care more if I am there often. Never thought, the 'golden years' would be like this. But, you have to adjust to what you are faced with. I am stressed and worn out. That is the reality of dealing with a loved one with this condition. Yes, I am still and always will be her advocate. Just, do your best for your wife! It is not your fault or hers.
I put alarms on the doors. I kept pads under her for incontinence. I would do laundry two or three times a day. I cleaned the carpet at three in the morning when she would have an accident. It got so bad I would have to stand her up and hold her while I washed and dressed her. I brushed her teeth. I would comb her hair every morning. And so much more. Toward the end i would hire companions to be with her so I could do the shipping. That was difficult leaving her in the care of complete strangers but they turned out to be good ones.
She only had one friend in the state but she was helping her disabled husband most of the time.
If you can think of anything else I probably did it. I had to keep reminding myself that her actions were the result of that damned disease.
If I or anyone else here can help you please ask. I can be a very long journey and we are here for you.