After posting my 1st message, & receiving responses which I thought were valid, I decided to re-start my own life. I have been out of town 2X, had dinner with friends, hair appointments, etc. I cannot tell you how very different my perspective is about my life with my husband. Fortunately, he is physically OK, but he shouldn't be left alone...he absolutely depends upon me for everything. He stayed with his youngest son, who lives in the same city, for 4 nights...his oldest daughter came to be with him for her annual visit. I guess it was OK, as they do not speak to me at all, and my husband cannot tell me too much. He is able to go alone on a plane, once we walk him to the gate...so he has been to football games with his eldest son, who lives out of town. After their suing us in Probate Court for 1 year, devastating our lives & finances, they now seem to realize meaningful time might be short. I do not feel guilty for leaving, I am happy he is seeing his children. My message: GET OUT OF THE HOUSE & LIVE!
None of us can help someone else if we've messed up ourselves. Remember, even on planes we are instructed to take care of ourselves before we assist anyone else, even young children. Because if we don't take care of ourselves, there will be NO ONE but a paid facility to look after our spouses.
I truly believe this probelm is of epidemic size, and soon the doctors & society will realize the care of chronically incapacitated elders has to change. This disease is hideous because it sucks the life out of the caregiver as well as the patient. Discussion is moot. If someone needed open-heart surgery, they could probably discuss their own treatment. We are dealing with situations that are life-altering, while standing hopelessly by watching & waiting for death of people we love. Only by making all this known publically can we ever hope for changes. What changes? I have absolutely no clue. I just know it is not correct for families to be destroyed by an illness which has become commonplace. EVERYONE KNOWS WHAT ALZHEIMER'S IS, DON'T THEY?
I feel for each of you who have posted messages, because I know how much it hurts to be left standing alone not knowing what to do...when we are all at ages when life was supposed to be golden.
Sound off to congress, your mayors, your governors, your school boards, the newspapers! Call Bill O'Reilly, Glenn Beck, Greta Van Susteran, the White House. The aging of the population demands we be pro-active, doesn't it?
Everyone paid attention when the little rat from Iran came to the US yesterday/today. He really is a pipsqueak in this country! We aren't. And, we should stand up and let the other Americans know what could happen in their families.
Wow; great message. Getting away is so healthy while we still can. I am the Master of the "Three Day Trip." I can pack in fifteen minutes, I leave lists and have friends come to visit him. There are no chores or work for him. There's enough food/water out for pets. Plants are watered to saturation. Laundry, dishes, mail, trash all wait for me when I get home. Don't care. Mini-vacations are wonderful! And like you say, the only one who can take care of me now is me. And if I'm recharged I can better take care of him. So thanks for reminding us of how important breaks are...
Good thoughts. Jeff has gone to visit his brother in Colorado several times in the past couple years. They enjoy the time together, and I enjoy the mental space. It would be tricky to get away on my own now as I have a 15 year old son who would in no way be capable of getting himself out of bed, in the shower, and to his carpool location at the right time if at all. (Just that kind of kid...he'll grow up eventually.)
Luckily though, Jeff has not reached a stage where it's trying to be with him 24/7. In fact, he's often very good company. Not what he used to be in terms of intellectually stimulating conversation, but you can't have everything.
A concern I have for the future though, is just that--will it get more difficult, and will I be able to wrangle a way to manage it? This falls squarely into the taking one day at a time department. (Or, as my mother says--my dad has Parkinson's--no point in borrowing trouble from tomorrow.)
YES! I agree wholeheartedly about getting out and doing things for ourselves. Sid has never wanted me to travel without him - he was adamant about it - he was always afraid I'd be killed in a plane crash, and he couldn't bear the thought. I occasionally went anyway - usually to visit my sister in Chicago.
Now, he is even more against it than before. I am also a little nervous about leaving him overnight, because of the medication memory issue, and his forgetfulness in the kitchen - he forgets to put food back into the refrigerator, and I don't know if he would remember to shut off the stove.
So it's day outings with the girls for me. And I have a card for a free massage at our local Spa. I am calling for an appointment as soon as I finish this message!
Two more days and we are off on our Italian adventure. It's a lot of work getting ready and I just hope all goes well. The medicines are all prepared, documents ready and I plan to take charge of these important things this time round. I hope the experience will be exciting and positive and that I will have great stories to tell upon our return. Inge
I don't know how all of you manage to get away. Gord couldn't be left alone and yet he is not at a stage where some stranger could come in and stay. He would even wonder about a friend coming in for an hour or two.
You bring up an interesting point about the messages from those who are able to get away by themselves for awhile.
There's that "in-between" stage when they don't yet need a "babysitter", but certainly can't stay alone overnight, because they are so dependent upon us to remind them of everything. When they're alone for more than a few hours, they forget to look at the lists we left.
What about having a friend come over and take Gord out to lunch, so you can get away for an afternoon? He may like that better than having someone come over to visit.
Joan...A good friend of Gord's comes to take him to lunch every other week and I treasure my 2 hours if I am lucky but there is nobody else offering at the moment. Our one son is busy and stressed trying to find work now that he is home from Japan. The other is busy and stressed making a living and fighting a vindictive evil woman for time he is legally allowed to visit with his son. They can't come and take their Dad anywhere. What can you do>
First, Inge have a great trip. Hope all goes well. We were suppose to leave tomorrow for MI, unfortunatly friends that we were to stay with had to go out of town and I knew that my husband could not stay in a hotel for an extended time, so I have cancelled the trip for now. We'll see how he is doing come spring. He is also in that in between stage, cannot leave him overnight but he would rebel against a sitter. We tried it once with his sister staying with him. Not a good result for either of them. His children are all out of state so I am the only one that he is comfortable with. I was so looking forward to going away. Oh well I am going to take my vacation from work anyway and him and I will have some quality time together at home.
I don't even feel good about being gone for an hour. I have no safety concerns but Gord seems to get upset if I am gone too long. Last Friday, I walked to the library. I had been gone about 35 minutes when he called and asked where I was. He was then afraid for a few hours after I returned home. During the summer, he has been sitting outside a lot and people would come along and chat. With the days getting colder, there are fewer people out and I guess he is getting more afraid. I am not looking forward to the winter.
Stages of leaving them; Very early-OK if you make lots of preparations. Late early- I don't need anyone. You can leave me alone. No, I couldn't. I told him I need to get away for awhile and could not relax and enjoy myself if I was worring about him. Family takes care of him. Mid-More planning, but he his happy to have someone to take care of him Almost late stage-No more getting away, except for short trips. Paid care givers mostly. Family has mostly taken their turn. You only get once! I think they are afraid of it now. As one step-daughter told me last night she has not called the last few months, "because she is trying to distance herself". She lives a long way off, but she could call and talk to him! I told her, "it is not a luxury I have". I feel I am getting very alone in taking care of her/their dad. A dad who was always there for her. Sorry I got off on that. My nerves are still raw from that confrontation. They all have busy lives. They sure are lucky their dad found me. I am lucky too. Barbarakay
What your stepdaughter said is so typical, not only of some relatives, but of a lot of "friends". They stop calling or coming over because they "don't want to see him like that". I think that may be what your stepdaughter was trying to convey. It stinks, for sure.
And yes, both you and your husband are lucky to have found each other.