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Bill on his iPad checking the weather patterns
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Being a full-time caregiver for a 93 year old man who has suffered two strokes is perhaps the hardest thing I've ever done in my life.I didn't expect this to be easy. It is not.
I've read a lot about the obstacles that caregivers face. I was prepared for that rough path. I knew my limitations and abilities but I thought I had prepared myself for what I would be living with 24/7 once I brought Bill home from the rehab hospital last February.
When Bill first came home he was little more than like a turtle on its back. No control over his bodily functions, confused and dejected. There were times when I seriously considered the OTHER option of not having him here at his home where he is most comfortable and well cared for. No matter how fancy or expensive the care facility, he would not received the level of care that I give him here at home.
Over the months since he's been at home he has managed to get out of the "turtle on his back phase" and pretty much move around on his own. Thank God he hasn't fallen. He's very careful about that. When he first came home he used the walker all he time. He doesn't know although it is available next to his recliner chair in his bedroom.
We still have the bathroom issues but not as bad or as often as when he first came home. He does wear Depends all the time now, which we change daily, necessary to contain any accidents, which still happen occasionally. At first he complained bitterly about having to change his "panties" every day (as we call Depends) but now he realizes that an ounce of prevention is worth a pound of cure. Like most of us I was squeamish about cleaning up "messes" but I soon got used to that, as I was told by a friend of mine who was his longtime partner's caregiver under similar circumstances. Still, if I can avoid cleaning up a "mess", I'm all for it.
Bill is still weak, he sleeps fourteen to sixteen hours a day now. He is more easily confused and his cognitive abilities have declined precipitously. It's scary actually that he can't string together the simplest tasks. But as I always say, he knows who I am and he's not in pain. I'm not religious but I say THANK GOD!
One of the biggest problems is his eyesight. Because of his macular degeneration the only thing he can see is shadows, light and color. He has some peripheral vision but zero central vision. I can stand in front of him and he doesn't see me. When I'm out back in out back yard trying to recover our army worm damaged back lawn, he only sees my shadow. When I look at him directly into his eyes it's like looking into the yes of a blind person. He's looking at me but he can't see me and even sadder, I can't see him through his eyes. The eyes are the window to the soul, I can't see his soul.
I feel so bad for Bill because he tries so hard to have some semblance of a normal life but because of his eyesight he doesn't. When he does attempt something he only makes it worse and then I have to go in and correct the problem he's created. What he did with our portable Hoover vacuum cleaner last week was unbelievable. He couldn't connect the attachments fo he taped them together. The only thing was that he had the attachments on backwards. Then he strung the electrical cord over the HVAC elements around our basement heater. Why? What was THAT all about? All he could do was say "I was trying to make it easier for you." I told him that he could "make it easier for me" if he just left it alone. Then he gets upset and starts crying.
Sometimes folks I just want to lie down and not wake up. I feel like I'm trapped but I can't let him out of my care. Now don't anyone give me suggestions as to what to do, I know best how much I am capable of and if and when the time comes that I can't control the situation anymore. The most important thing now is to keep Bill comfortable and the best way to do that is to keep him here at home with me and his surroundings. To put him in a facility would be a cruel end to his life and cause me sleepless nights wondering about him. No, he stays here. At least as long as he can get around on his own.
I can help him deal with his frustration and depression over his lack of eyesight and no longer being able to work on his projects, which has been his life for the past ninety-two years. We have our daily rides, which he so enjoys and our routine, which even if he complains sometimes I think gives him comfort.
His hospice nurse visits him once a week. Takes his blood pressure and asks him a series of questions. He blood pressure continues to be below the norm that the medical care workers were sending him to the emergency room. We couldn't live like that, that's why he's on home hospice care.
In a couple more months he will have been on home hospice care for a year. I don't know how long that continues. I guess I'll find out.
Interestingly one of the hardest things to deal with now is his speech. I have a hard time understanding him. Sometimes I can but about half the time he slurs his words so heavily it's like he's speaking a foreign language. I think he talks like that when he gets tired. If I can understand a few words I can understand what he's talking about. And when I can understand his words, often he uses the wrong word. Then I have to try and translate what he's saying.
Then there are the cognitive issues. One thing he can use is checking the weather patterns on his iPad. But the thing with the iPad is that it is touch sensitive. He doesn't understand that so I'm continuously having to clear off a multiple range of website on his iPad so he can see the colors of the weather pattern. I try and tell him not to drag his fingers across his iPad but he doesn't understand. So this is something I have to do several times a day, clear out all the screens he's accidentally brought up with dragging his fingers so he can see his beloved weather patterns.
I can list so many cognitive things we take for granted but that would be boring and perhaps perceived as being cruel, but her's another one. About half the time he gets out of the car he doesn't remember where the door latch is and he only succeeds in hitting the child lock mechanism and locking us in the car. I never used that mechanism but you better believe I know how how to clear it after being locked in the car and trying to figure out how to get out. And you know what? He'll do it again.
Bill's waiting on my now to put him to bed. He goest o bed when darkness falls, which now is early. During the summer he, of course, went to bed about three hours later and had no trouble sleeping. Now that he's going to bed at 5:30 pm instead of 8:30 pm, he had trouble sleeping. We (his hospice nurse and doctor) had to double his sleeping pill dosage.
Our routine at night is I give him his nighttime pills (he also has morning medications). He goes down to his basement bedroom by himself. I go down later to make sure his room space heater is on, because he's always cold because of the blood thinner medication he takes. I make sure his hearing aid is out and he's comfortable. Before I go to bed at night I check in on him at night to make sure his heater is still on, because sometimes it turns off by itself (safety feature I guess).
This morning I had a scare. I woke up dizzy and nauseous. My occasionally reoccurring vertigo was visiting me. This is when I really worry, what would happen to Bill if I could no longer care for him? I don't even want to think about it. I managed to get get up and go downstairs to Bill's basement bedroom and get him ready for his every third day shower. He hates that but it is necessary. I don't know how I managed but I did and I was exhausted and had to lie down after I gave him his morning medication and prepared his oatmeal breakfast. Who would take care of him like this if I wasn't around? No one, that's who. I'm not religious but I pray that I will be able to take care of Bill for every day he has remaining on this earth.