Caregiving Part 2, Part 3 and Years Later

I'm ashamed to say that I started these posts a couple years ago when my job as caregiver was actually much more relaxed and my husband was better. Oh, his temperament also improved. I think it was mainly because he finally realized his limitations and I didn't make a big deal out of them. I still automatically do some things and I encourage him to rest when he's overdone himself. He STILL does that and I just accept the fact that he finds it hard to feel he can't do what he wants all the time. He just knows he can't do some things for very long. He has to stop and rest or at least take a break.

But the difficulties of caregiving are still with me and I try to give encouragement to others who find themselves in the same situation. God knows it was offered to me back when I needed it and it only seems fair to pass it on to others. It doesn't matter if their spouse, parent or child has had a stroke, heart-attack, is going through chemotherapy or some other situation that you have to just suck it up and do whatever must be done. It's hard. It's emotionally debilitating. Even worse, it's hard to find some *me* time and you need that time just to regroup and be ready for whatever trials are ahead.

You also have to be able to be believably encouraging. You must believe that there WILL be improvement, there WILL be better days ahead or you won't be able to help the patient. You also have to know when to let them try to do things for themselves. You have to be able to see them try and try and even fail at times. That's more difficult than I can tell you. It's kind of a *tough love* thing. You do it because you MUST. You cannot protect them from their need to try to do things for themselves because that is the only way THEY know things are getting better. And, for heaven's sake, learn to use your sense of humor whenever possible. That can be a challenge since most times nothing is really humorous to you when it's someone you love. But you CAN learn to laugh and make light of things and even to encourage them for small accomplishments. Sometimes they don't see things they have done because it's not all they WANTED to do.

I would also encourage laughter around them in any form you can muster. A funny movie they can or did enjoy. Friends that have the right attitude and can talk about good times you have had together and how they look forward to more of the same. If you have an animal, cat, dog or otherwise, don't keep them away. They seem to have a sense for illness and recovery and it can do wonders for the patient to just have an animal curl up in their laps or next to them for a while. Let the children visit. Sure, they may have questions but answer them briefly and honestly.

I think the saddest thing that happened after my husband's stroke was that I didn't encourage my granddaughter more to be herself around her grandfather. We had been raising her most of her life and had custody of her. She was always very affectionate and loving towards him before he had his strokes. Perhaps because she was there when it happened and didn't understand his debilitation afterwards, she became distant and never hugged him again that I ever saw. I know he missed that and it saddened me. When I attempted to talk to her about it, all she ever said to me was that *he smelled like he was dying* and that was that. It was very sad. It took years for her to get over that but, by then, she was dating and working and becoming independent.

I think he tried to compensate for whatever it was he felt because she got the best of everything. I think that was probably a bad move on our part because she started to expect whatever she wanted like we were still bringing home a lot of money. We all had gotten a bit spoiled when we owned our air conditioning company. We DID make a lot of money. But now that the business was sold to our former employees, that income was gone. The money we had, we had to conserve for whatever the rest of our lifetime might be. We still bought her all the special shampoos and rinses she wanted, the food she liked to eat and snack on. We paid for her cell phone. She had a new computer every couple of years, the best monitor, sound system and a nice car. It wasn't new but it was only three or four years old when we bought it for her.

Yet she never hugged her grandfather again. I always noticed and realized I failed to sit down with her and explain all I knew about a stroke and recovery. She only visited him once or twice while he was in the rehab center. I just couldn't turn my attention to her because I didn't see it until too late. He took all my time and energy with nothing left over for a long time. He spent over a year in rehab. First as an inpatient for several months (almost 9 total because of his second mini-stroke six months after the first one) then as an outpatient until they felt he had pretty much recovered as much as possible. After that, it was MY problem.

It is now just two years since I wrote the first two blogs you will find here. I wrote those late at night when I just felt this compulsion to admit to my frustrations and fears. You have them no matter for whom it is that you must become their caregiver. There are chats for caregivers. Find them, use them, they can be a real lifesaver. More on this in a later post.

It is also now six years since my husband's strokes and he is definitely a survivor. The doctor said he might live five years and he's broken that prediction. Heck, he'll probably outlive me now (insert laughter here). Do I still act as a caregiver? Yes, but now it's differently. I will tell you more about that another day. Suffice it to say, the job never ends but it does become easier and easier as time goes on. Do I have concerns? Yes. Are some days frustrating? Yes. Are some days good? Definitely. But I can now sleep well at night and no longer worry about waking up next to him and finding him dead. If he needs me, I will awaken and I know what to do. That is the greatest gift I have received. I know I won't panic and I will find the strength to deal with whatever happens. I did it once and I can do it again if necessary. I just pray I won't have to because I am not sure HE could deal with it again.